Volume II April 2007

From the Editor Pauline could come home for a who was paralyzed? What kind of hu-
Sandy Siegel weekend. On my way home from man being was I really?
work on Friday night, I picked up
Pauline from the hospital. I filled my I don’t remember what I did after I got
I have very little patience these days. I car with an assortment of adaptive home from returning Pauline to the
anger quickly, and as I tip my husband equipment and we headed home. I hospital. I have no doubt that it in-
Steven forward in his wheelchair to could easily fill up the entire Journal volved my head spinning in 360 de-
help him get into a more comfortable describing that weekend. I will, in- gree circles on my shoulders like the
position, I find myself shoving more stead, just tell you that it was the girl in the Exorcist.
than tipping. I resent the nighttime most emotionally and physically ex-
tasks of getting him undressed and into hausting experience of my entire life. I would love to report to you that I had
bed, and especially the middle-of-the- I took Pauline back to the hospital on absolutely no doubt in my mind from
night cathing. I cry easily. In short, I Sunday afternoon. As we were roll- the time Pauline became paralyzed that
am burned out. As I was helping Ste- ing past the nurse’s station on her I would remain by her side for the du-
ven with something (I can’t even re- floor, I almost said to the pleasantly ration. I cannot honestly make that re-
member what right now), I just lost it. smiling nurse, “Wow, you aren’t go- port. I had no idea what I was doing
I screamed at him, “I can’t do this ing to let her come home every or what I was going to do. I was
anymore.” He said something in re- weekend, are you?” frightened, I was very confused and I
sponse. I didn’t hear what, and at that was consumed with self-doubt. I was
time nothing he said would have Spending that weekend with Pauline in a place I had never been before. I
calmed me down anyway. “Don’t you totally shook me to the core. Pauline knew how I wanted to see myself, but
get it?” I shouted. “I just can’t do it was completely paralyzed from the I didn’t know if I was really the person
anymore! I don’t want to do it any- waist down. She had absolutely no I very much wanted to be.
more!” bowel or bladder control. She could
move nothing below her waist. Our It’s not easy to deal with change when
These words were written by Suzanne bedroom was on the second floor. you can see it coming – when you can
Mintz in an article entitled, We had steps into every entrance. prepare yourself or plan for it. Even
“Recognizing Burnout” (Take Care! There wasn’t a doorway in any room the most exciting and joyous events in
Volume 15, Number 1, Spring 2006, in the house that would accommo- our lives, such as marriage or becom-
3). Suzanne is the President and Co- date a wheelchair, including any of ing a parent cause us emotional and
Founder of the National Family Care- the bathrooms. Transverse Myelitis? psychological stress, because change is
givers Association; Steven is her hus- No clue. The TMA did not exist. stress. Getting TM or NMO or ADEM
band and he has MS. She wrote an ar- The TMA web site filled with infor- is another kind of stress. It is the
ticle about becoming burned out and mation did not exist. The Johns worst kind of stress. There is nothing
needing to find help to care for Steven. Hopkins TM Center did not exist. positive about getting sick and being
I was totally riveted to her words. My My simple, little brain was bom- left with permanent spinal cord dam-
mind wandered to the following barded with confusion, fear, anxiety age. It happens without warning so
thoughts as I pondered Suzanne’s and anger. What was Pauline’s life that no one is given any chance to pre-
situation. going to be like? What was my life pare themselves for it. And it happens
going to be like? Was I going to be with such immediacy that no one is
Pauline was in an acute care hospital able to handle this situation? Was given a chance to adapt. There’s noth-
for a week after her attack. Once she she going to get better? Was she go- ing great about breaking one’s neck in
received IV steroids and her doctors ing to get worse? Was our relation- a car accident, but there is an under-
were comfortable that her condition ship going to survive this challenge? standable cause and effect. One might
had stabilized, she was transferred to a Could I stay in a relationship with a be pretty resentful or angry or bitter
rehabilitation hospital. After a week in person who was paralyzed? Was it about a football injury, but they aren’t
this rehab hospital, we were told that possible for me to leave a person going to be particularly confused about
Page 2 The Transverse Myelitis Association
how they became paralyzed. This is dren or their siblings or their parents. situation. “What kind of parent let’s
not the case with these disorders. I have devoted a lot of time and en- their children do that?” “How could
ergy into trying to understand how that guy treat his wife in that way?” I
Pauline was getting dressed and bent and why people think and emote and hear these sorts of judgments from
over; instantaneously she was totally behave as they do. It is the anthro- people all the time. I’m sure we all do.
paralyzed from the waist down. It was pologist in me. It is personally im- I have come to believe that none of us
beyond her ability to comprehend. It portant for me to come to some un- know how we will handle a situation
was definitely beyond my ability to derstanding about and to ascribe until it happens to us. I don’t presume
comprehend. The emergency medical some meaning to something that has how I will handle anything, so I work
technicians didn’t comprehend it, but so dramatically and permanently at not judging how someone else is do-
they did carry Pauline out of the house changed Pauline’s and my life. ing it.
on a board. And as it turns out, the
emergency physician took about nine In contemplating Suzanne’s article, I We are all human. We are all selfish.
hours to begin to comprehend it. We wasn’t focused on her becoming We all have wants and needs that we
were the entire congregation of the not burned out; I was fixed on her emo- think about and feel more directly and
comprehending. tional honesty and candor. It was ab- immediately than anyone else’s wants
solutely compelling, because it was and needs. I would love to spend all
No one is told by a doctor, “I’ve got so real and so incredibly human. I of my time being an altruist, but my
some bad news for you. We just got was overwhelmed by the risk she “me” so often gets in the way. The
back your test results and you are go- took personally to be so honest in the difficulties we experience in being
ing to be developing some pretty chal- sharing of her thoughts and feelings. selfless might be the reason we’ve in-
lenging symptoms.” No, with these vented shame and embarrassment.
disorders, all of the symptoms happen Human beings feel what Suzanne Shame helps us to keep our “me” on
– some time between right now and to- was describing in her experience the “right track” from within ourselves
morrow morning. After you are com- with Steven. Human beings experi- and embarrassment is society’s advo-
pletely paralyzed, unable to urinate, ence what I thought and felt about cate for controlling the “me”. Thank
unable to have a bowel movement, the weekend Pauline came home goodness I don’t have to do all of this
having horrible spasms and/or nerve from the hospital. Suzanne’s and my behaving myself on my own.
pain, some doctor tells you, “well, you disclosures are so important. By our
know the bad news, and it’s called sharing these experiences with you, How does one experience an intense
Transverse Myelitis or Devics or we are assuring you that you are not tragedy and life-changing event with-
ADEM.” the only person in the world who has out running headlong into some self-
these thoughts and feelings. In a doubt? I have had significant ques-
These disorders are the perfect storm way, this sharing offers you some tions about my character throughout
of emotional and psychological chaos “permission” to accept these this entire experience with Pauline’s
– without warning, inexplicable, im- thoughts and feelings in yourself. illness. I have experienced a signifi-
mediate, aggressive, severe, and for You aren’t crazy and you are not a cant inner struggle between who I am
many, permanent. Getting TM or horrible person. You are not alone; as a human being and the person I
ADEM or NMO is like the nuclear ex- this is what human beings do. would like to be.
plosion of human experience; no one
will ever have a more memorable When horrible things happen to peo- Sharing in what Pauline has been
event in their entire lives, regardless of ple, not everyone reacts with heroic through physically, psychologically,
what else happens to them. and virtuous thoughts and behaviors socially and emotionally has been so
24 hours a day, seven days a week complicated and challenging. I can
I’ve had a lot of time to think about all and 52 weeks out of the year. Most see how horrible her life can be when
of this emotional and psychological of us want to think of ourselves in she is frustrated by falling down or
chaos. First, I had a front row seat in only the most positive ways. When doesn’t have the strength to walk
watching this happen to the woman I bad things happen, we want to be- across the street or how miserable be-
love. Then I found myself in this in- lieve that we will handle these ex- yond words she is when she is de-
credible role of picking up my tele- periences consistent with our highest pressed or how beaten down she can
phone almost every evening of the ideals and values. I am often some- feel by fatigue, or how despondent and
week (after I get home from work) and what taken aback at how judgmental defeated she can be when the pain will
listening to people recount similar ex- people can be in reflecting on how not subside or how fearful she can be
periences for themselves or their chil- someone else handled a particular about accidents or how embarrassed
The Transverse Myelitis Association Page 3
by having one. I’ve made my way through the jour- and particularly when they are not
ney to this place and time, and you healthy thoughts and feelings, we can
I don’t have any of these symptoms, get today’s status report. reinforce a negative pattern without
but when you like, care for, love and finding a healthy way out or an alter-
respect someone who is going through Complete honesty and candor is dif- native. We all need other people to
all of this; it can be entirely mind, ficult. We often don’t share because help us think about ourselves – who
heart and soul numbing. I feel so we don’t want to be judged. We and what we are. This is one of the
badly for Pauline, but I also feel badly want to be accepted, liked and loved. important things we do in our interac-
for myself. I have had to mourn losses And we want to like and to love our- tions and relationships with people –
in my own life. Life would be so selves. We have some conception of they help us to think about and to test
much easier for her without all of these the kind of person we want to be. our own ideas about who we are. This
issues, and it would be so much easier That model is what we use to judge is one of the reasons why we don’t live
for me, as well. our personal successes and failures, in caves by ourselves.
when we are being honest with our-
When I got Pauline back to her room selves. These composite models are Am I thrilled with the thoughts and
at the hospital after the weekend at formed and continue to be formed feelings of self-doubt I have swirling
home, I didn’t share my feelings with from our experiences in life. There around between my ears on occasion?
her. I didn’t announce to Pauline that I are significant contributions made to No, not really. I’d prefer that my head
had all of these doubts about myself. these models by our parents, grand- be filled with the stuff that filled the
It would have been massively unkind parents and other family members, brains of Gandhi or Abraham or
of me to give her my issues to deal by our teachers, by friends, and by Moses. But then we really don’t know
with while she had so many of her the many cultural institutions that what those guys were thinking about
own. She had more than enough to fill help to shape our values and beliefs, before they decided to either act or
her brain with during her stay in the such as religious organizations, talk. So, I may feel weak, or confused,
hospital and for years afterward. To schools, social and community or- or be filled with self-doubt, but, fortu-
the best of my ability, I put on the ganizations. nately I only get judged for my behav-
brave face, took on my role as gladia- ior.
tor with the insurance company, tried My common sense leads me to be-
to do as much problem solving as pos- lieve that we create some serious I have come to appreciate the responsi-
sible and then waved my pom poms conflict for ourselves when we don’t bility I have in writing these columns
around wildly as I provided as much achieve some convergence between and their potential value for people
emotional support as I possibly could. how we would like to see ourselves who can relate to the experiences I
I knew that I needed to sort through and how we actually think, feel and write about. I know that by exposing
these issues on my own, and depend- act. The amount of difference be- my honest thoughts and feelings, no
ing on how I resolved all of this for tween our ideals and our actual feel- matter how uncomfortable or how hu-
myself, I may or may not have ever ings, thoughts and actions probably man, I am helping someone who is try-
shared any of this mental and emo- bears some relationship to the ing to come to terms with their own
tional gymnastics with Pauline. There amount of conflict we experience. humanness.
are some issues that we need to sort I’m not a trained professional, but
through for ourselves and find a reso- I’m guessing this is how it works. I owe an enormous debt of gratitude to
lution before we decide to share these Pauline for allowing me to do this
with the people we love. That’s cer- Some people seek help in reconciling writing. I don’t publish anything that I
tainly what happened between Pauline this conflict between how they want don’t have Pauline read first and ap-
and me. to be and how they are. People often prove. I do this because I love and re-
turn to their religious institutions to spect Pauline. I also do this because
I also didn’t come home and tell eve- find comfort in this personal conflict. I’d prefer for her not to put her pillow
ryone in my family that I was con- Some will rely on talking and getting over my face in the middle of the night
cerned about spending the rest of my feedback from family and friends. and sit on it.
life hiding under the couch. I would Some people go to counselors. All
have felt horrible guilt and shame of these approaches are good. Get- Pauline and I are close to being on dif-
about sharing my emotional and men- ting help is a very good thing. ferent sides of the planet when it
tal turmoil. And if I had taken up per- Sometimes when we use only our comes to exposing our feelings and
manent residence under my couch, I own brains to provide us with feed- how we talk about our experiences.
wouldn’t be writing this column. So, back on our thoughts and feelings, First, I have no trouble exposing al-
Page 4 The Transverse Myelitis Association
most everything about how I think and with me?) There are the physical everyone in the world need to know
feel. Secondly, it is a natural part of problems which result from the spi- about my sexual issues?” I was hold-
my personality and world view to be nal cord damage; and given that the ing a copy of the article in my hand
able to laugh at just about anything. nerves that are involved in sexual and out of frustration, flipped it up in
There’s a good chance that I will cry function are so low on the cord, there the air. As the pages fell down around
about the same things, but finding a is the potential for significant num- me like large snowflakes, I considered
way to laugh about them is also going bers of people to be impacted. Many that I was experiencing the end of my
to happen. Pauline does not find a of the medications people take for stint as a newsletter editor. If I wasn’t
shred of humor in tragedy. Pauline depression, nerve pain, fatigue and going to have permission to talk about
finds overwhelming sadness in tragic other symptoms can have the side ef- sensitive or personal subjects, there
events. She is often times appalled at fect of diminished libido. And then was going to be little of real signifi-
my willingness or perhaps my need to there are all of the self concept and cance that I would be able to write
find humor in everything. There are body-image issues people may strug- about that would help people with
times when she draws a bright line and gle with in coming to terms with their very sensitive and personal is-
insists that I keep my brilliant wit and their sexuality. sues. The best I can do is to take these
charm all to myself. difficult subjects out of the shadows
I knew that the prevalence of sexual and to shine a big light on them. I
We are who we are. All of life experi- dysfunction with TM was significant. want to communicate that it is normal
ence is filtered through our personali- I also knew that people weren’t talk- and healthy to be thinking about these
ties, our value systems, our life experi- ing about it. Out of 815 respondents issues and to be talking about them.
ences, our belief systems. Some of our on the TMA survey, only a very
filters are shared, but we all have a small number identified sexual dys- By the time it had stopped snowing,
very unique combination of these fil- function as a symptom. It would be Pauline came around to accepting that
ters through which we understand and hard to imagine that there is anyone she and I had a responsibility; we had
incorporate all of our lives’ events. in the world who speaks with more to be able to expose our lives and our
No two people will perceive of the people with TM than me. If I don’t thoughts and our feelings. I got per-
same event in the same way. We are raise the issue with people, sexuality mission to print the article. Pauline is,
just all way too complicated for our does not get talked about. If I raise however, always relieved when my
own good. the issue, there is ordinarily a lot column is devoted to begging for
people want and need to talk about. money.
Pauline is a very private person. If Pauline has been cared for by some
Pauline were writing this column, she wonderful doctors over the years, I do all of my writing from the per-
would tell you everything you wanted and sexual dysfunction has been very spective of a caregiver. It is what I
to know about our house plants or our rarely discussed. I have assumed know. I can’t write as a person who is
plans to paint our garage her favorite that if Pauline’s doctors were not paralyzed; or a person who has TM,
shade of purple, or she would wax phi- raising the issue with her than many ADEM or NMO. The closest I have
losophic about the amazing healing doctors were also not initiating this come to knowing paralysis was when I
powers of chocolate. Her bowel or discussion with their patients. was 32 years old and got Bell’s Palsy.
bladder problems? Don’t think so. I woke up one morning, and the entire
It was perfectly clear to me that I left side of my face was paralyzed. I
I wrote a column in July 2000 about really needed to cover sexuality in was lucky; it only lasted for a few
sexual dysfunction. I didn’t write this my editor’s column. So, I wrote the months. My accommodations were
article for the purpose of torturing article that needed to be written. I not complicated. I deftly moved the
Pauline, although if one had observed knew that it would stimulate people cigarette from the left side to the right
her reaction to my article, you might to think about and talk about the is- side of my mouth. (Hey, when I fig-
have concluded that this was my goal. sue, and that is all good. ured out -- with great consternation
I wrote the article because I intimately and shock -- that the concept of mor-
understood that sexual dysfunction When I finished the article, I handed tality also applied to me, I quit smok-
was a symptom of these neuroimmu- it to Pauline and I asked her to read it ing). My facial expressions became
nologic disorders. The assault on and to give me permission to publish very confused, my speech became a bit
sexuality in TM, NMO and ADEM is it. She finished the article and then awkward and eating was messy. I
ferocious. (How else might one find a looked at me like I had just pur- don’t know paralysis; I know care-
rational explanation as to why a posely backed over Bambi in the giver.
woman wouldn’t be interested in sex driveway. She then asked, “Does
The Transverse Myelitis Association Page 5
I have understood the importance of cles give up some privacy by sharing difficult but it has also been exhilarat-
this sharing from the very first publi- their experiences, but what they give ing and wonderful. I do the best I can
cation of our newsletter. This is pre- in return is a remarkable act of kind- to manage my self-doubts and my
cisely the value of the In Their Own ness to people who are newly diag- fears. Do I fail my conception of my-
Words articles. In every publication, nosed and their loved ones. self? Yes. I am most definitely not
there are people who share their per- the person I want to be for Pauline all
sonal experiences with TM, ADEM I use the editor’s columns to intro- of the time. But I have a better sense
and NMO. The sharing is invariably duce new or important ideas or pro- of the divergence between who I want
about the onset experience – for the grams to our community. I also use to be and who I am and the work that I
reasons noted above, this is the experi- these columns to ask for your finan- need to do to close that gap. Will it
ence people need to talk about. We cial support, because it is imperative ever be totally closed? Well, probably
owe a tremendous debt of gratitude to that I remind you that we can do not. I just keep telling myself, the gap
the people who are willing to do this none of the important work that is is what makes me so irresistibly
reflecting and sharing. They, too, are being accomplished without this sup- charming. I have no doubt that
taking a risk by exposing their experi- port. But the most important goal I Pauline sees the gap as looking more
ences, and their thoughts and feelings. have in these columns is to help you like the Grand Canyon and which
to better help yourself. My editor’s makes me so incredibly annoying.
This is a good place for me to remind columns are meant to provoke your
people that when you publish an In thoughts and to encourage you to We are blessed. Mine and Pauline’s
Their Own Words article in the TMA share your thoughts and feelings with relationship is stronger and more posi-
newsletter and journal, your article is the people who care about and love tive than it was before she got TM.
printed and then posted on our web you. Or to share your thoughts and We respect each other more, we have a
site. It is important to keep in mind feelings with your physicians and stronger bond, and we have deeper
that should someone do a web search other medical professionals who are feelings for each other today than we
using your name, your In Their Own responsible for your care. did twelve years ago. We also have a
Words article is likely going to come more focused and shared set of priori-
up in the search. There is no way to So many of the symptoms of these ties in our lives, i.e., the hundreds of
convey the incredible value these arti- disorders are not just physically chal- my small behavioral quirks don’t irri-
cles have for people who read them lenging; they are also socially, emo- tate her so much; it is the four or five
when they are published, and the value tionally and psychologically chal- major character flaws that have be-
they have when people find these sto- lenging. By raising these issues, I come the focus of her unwavering at-
ries on the internet when they are hope to light a spark of motivation tention. Hey, I’m evolving as fast as I
searching for information about TM, for you to become more informed possibly can.
ADEM and NMO. Just think about it and to more aggressively advocate
… when you got TM, NMO or for better treatment of your symp- The emotional journey of our relation-
ADEM, what would it have meant for toms or to help you find a way to a ship has not been a straight path from
you if you had the opportunity to more positive place for yourself. I there to here. We’ve been every-
spend a few days reading about peo- know that there is some relief in where; from the dark and difficult to
ple’s onset experiences? Yeah, it knowing that someone else is con- peace and contentment and every-
would have been the same for Pauline fused or anxious or frightened or an- where in between. It has been and it
and me. We would have been totally gry. It helps to know that what you remains a very human journey.
freaked out, but we would have been are going through is a shared experi-
relieved to know that we weren’t ence. It is also my hope that by talk- Please take good care of yourselves
alone. And most of these articles pro- ing about subjects that I know some and each other.
vide contact information, so we could people have a difficult time with, we
have reached these people to talk to can help people to think about and
them. What an incredible blessing. talk about these issues. And it is my
And these people will serve as this most fervent hope that people will
wonderful resource for many years to use these discussions as motivation
come. I hear from people over and to seek help with issues that are be-
over again that they spend many hours yond their personal abilities to man-
on our web site reading the In Their age or resolve for themselves.
Own Words articles after they find our
web site. People who write these arti- Pauline’s and my journey has been
Page 6 The Transverse Myelitis Association
Medical Advisory Board Chitra Krishnan, M.H.S Advances in the
Executive Director, Project Understanding and Diagnosis
Gregory N. Barnes, M.D., Ph.D. RESTORE of Neuromyelitis Optica and
Assistant Professor of Neurology and Sr. Research Program Coordinator Transverse Myelitis
Pediatrics, Divisions of Child Johns Hopkins Transverse Myelitis
Center Brian G. Weinshenker MD
Neurology and Epilepsy, Department
Department of Neurology Department of Neurology
of Neurology
Johns Hopkins University Mayo Clinic College of Medicine
Vanderbilt University School of
600 N. Wolfe Street Rochester MN
Medicine
Room 6114, MRBIII Building Pathology 627 C
465 21st Ave. South Baltimore MD 21287-6965
Nashville, TN 37232-8552 I am pleased that The Transverse Mye-
Charles E. Levy, M.D. litis Association is publishing the fol-
James D. Bowen, M.D. Assistant Professor, Orthopaedics lowing three articles, which are impor-
MS Center at Evergreen and Rehabilitation tant to patients with neuromyelitis op-
12333 NE 130th Lane Suite 225 Chief, Physical Medicine and tica (Devic’s disease) and also to pa-
Kirkland, WA 98034 Rehabilitation tients with transverse myelitis. Our
North Florida/South Georgia discovery of NMO-IgG, a biomarker
Benjamin M. Greenberg, MD, MHS Veterans Health Service for patients with neuromyelitis optica,
Assistant Professor, University of Florida and our subsequent discovery that ap-
Department of Neurology 1601 SW Archer Road proximately 40% of patients with
Co-Director, Johns Hopkins Gainesville, FL 32608 “idiopathic” long spinal cord lesion-
Transverse Myelitis Center type transverse myelitis are also posi-
Johns Hopkins Hospital D. Joanne Lynn, M.D. tive and at risk for recurrence has been
600 North Wolfe Street Associate Professor, Neurology a major step in the understanding of
Pathology 627C Multiple Sclerosis Center transverse myelitis. This discovery
Baltimore, MD 21287 The Ohio State University Medical has allowed us to identify patients who
Center are at risk for recurrence of transverse
Adam I. Kaplin, M.D. Ph.D. 2050 Kenny Rd Suite 2250 myelitis. Perhaps most importantly,
Consulting Psychiatrist, JHTMC Columbus, OH 43221 discovery of the molecular target of
Departments, Psychiatry and this antibody, a water-channel protein
Neuroscience Frank S. Pidcock, M.D. called aquaporin-4, may ultimately
Johns Hopkins Hospital Associate Director of Rehabilitation lead to the development of specific
Meyer 115 Assistant Professor of Physical treatments for these conditions.
600 North Wolfe Street Medicine and Rehabilitation and
Baltimore, MD 21287 Pediatrics The first article was published in the
Kennedy Krieger Institute Lancet in 2004. It describes the dis-
Douglas Kerr, M.D., Ph.D. Johns Hopkins University School of covery and characteristics of NMO-
Assistant Professor, Neurology Medicine IgG. This antibody, present in the se-
Director, Johns Hopkins Transverse 707 North Broadway rum of patients with neuromyelitis
Myelitis Center Baltimore MD 21205 optica, reacts with brain blood vessels
Johns Hopkins Hospital and the surface lining of the brain
600 North Wolfe Street called the pia. NMO-IgG is detected
Pathology 627C by a technique called immunofluores-
Baltimore, MD 21287 cence. This involves a search for the
pattern of staining of mouse tissue by a
© The Transverse Myelitis Association Journal and Newsletter are published human antibody in the serum of a pa-
by The Transverse Myelitis Association, Seattle, Washington and Powell, Ohio. tient after the antibody is detected by a
Copyright 2007 by The Transverse Myelitis Association. All rights reserved. second anti-human antibody with a
No part of this publication may be reproduced in any form or by any electronic fluorescent tag. The location of the
or mechanical means without permission in writing from the publisher. We ask antibody staining from patients with
that other publications contact us for permission to reprint any article from The NMO in mouse tissue suggested that it
Transverse Myelitis Association Journal and Newsletter. may target a protein that is at the inter-
The Transverse Myelitis Association Page 7
face between blood and the brain sub- when the antibody specifically recog- are at risk for relapse. On this basis,
stance called the blood brain barrier. nizes the antigen to which it directs, our group suggested that patients with
The localization both along the lining it forms an aggregate of antibodies a first event of transverse myelitis who
of the brain and on the outside of that “falls out of solution” and can be test positive for NMO-IgG should be
blood vessels further implicated a pro- captured and measured. Only aq- treated with immunosuppressive drugs
tein target in the “foot processes” of uaporin-4 and none of the other pro- to lessen the chance of a second or
astrocytes. Astrocytes are supporting teins in the complex of proteins that subsequent attack of transverse mye-
structural cells of the central nervous holds aquaporin-4 in the cell mem- litis even before clinical criteria for
system. They have long extensions brane were precipitated by NMO- neuromyelitis optica are satisfied.
some of which abut blood vessels and IgG.
the lining of the brain (glia limitans). Our group is continuing to work to
This pattern of staining later turned out This work provided definitive evi- prove the pathogenic significance of
to be a major clue as to the nature of dence that aquaporin-4 was the target this antibody. Specifically, we are
the target protein for this antibody. In of NMO-IgG. It suggested that aq- trying to determine whether this anti-
this article, our team studied a group uaporin-4 was the target of the im- body is merely a marker of the damage
of patients with neuromyelitis optica. mune attack in neuromyelitis optica. seen in transverse myelitis and neuro-
NMO-IgG was present in approxi- It also raised the intriguing possibil- myelitis optica, or whether it is actu-
mately 70 percent of those patients. It ity that by binding to these water ally the perpetrator of the damage. We
was present in a high proportion of channels, NMO-IgG might lead to are optimistic that it may be the actual
patients with either recurrent or first- problems with water transport in the perpetrator given the close proximity
event transverse myelitis. It was also brain which might explain some of of where aquaporin-4 is located and
present in a smaller percentage of pa- the unusual symptoms experienced the major pathological findings in spi-
tients who had recurrent attacks of op- by some patients with NMO. The nal cord tissue samples from patients
tic neuritis but had no evidence of aquaporin-4 paper is rather complex with neuromyelitis optica. Both aq-
myelitis. This suggested that the spec- and will be difficult for most lay peo- uaporin-4 and antibodies and inflam-
trum of neuromyelitis optica may be ple to understand in detail. Hope- matory proteins called complement are
broader than previously recognized fully, my summary comments will lined up on the outside of blood ves-
and may include patients who have assist you in focusing on the results sels. This suggests that the antibody
only optic neuritis or only long spinal of this study and the significance of may actually cause the damage that
cord lesion-type transverse myelitis. these findings. occurs in these conditions.

The second paper published in the In the third article, published in the I would like to thank Sandy Siegel and
Journal of Experimental Medicine in Annals of Neurology in 2006, the The Transverse Myelitis Association
2005, details definitive experiments Mayo Clinic neuromyelitis optica for allowing us to publish these papers
performed by Dr. Vanda Lennon and team studied patients with a first for your review. We hope that our
colleagues at Mayo Clinic that identi- event of long spinal cord lesion-type presentation of this information on the
fied aquaporin-4 as the target of transverse myelitis. These are pa- NMO-IgG antibody adds to your un-
NMO-IgG. They demonstrated that a tients who on MRI have a lesion ex- derstanding of these complex neuroim-
specific antibody directed to aq- tending over three or more vertebrae munologic disorders.
uaporin-4 gave exactly the same pat- in length. They found that approxi-
tern on mouse tissues as NMO-IgG. mately 40 percent of patients tested
Furthermore, Lennon and colleagues positive for NMO-IgG. Furthermore,
demonstrated that there was no NMO- in follow up, over 50 percent of pa- Reprinted from the Lancet, 364, Vanda
IgG staining of brain tissues of a tients with a single event of trans- A Lennon, Dean M Wingerchuk,
“knock out” mouse that was raised verse myelitis who were positive to Thomas J Kryzer, Sean J Pittock,
from an embryo from which the aq- NMO-IgG developed relapses of Claudia F Lucchinetti, Kazuo Fujihara,
uaporin gene had been deleted. Fi- transverse myelitis or developed op- Ichiro Nakashima, Brian G
nally, Lennon et al were able to show tic neuritis within one year. None of Weinshenker, A serum autoantibody
that the antibody was able to directly the patients who tested negative for marker of neuromyelitis optica:
bind to and precipitate aquaporin-4 NMO-IgG experienced relapses. distinction from multiple sclerosis,
protein while none of the other pro- This suggested that many patients 2106–12, Copyright (2004), with
teins which bind aquaporin-4 to the who present with the first event of permission from Elsevier.
cell membrane were precipitated by transverse myelitis may have a lim-
NMO-IgG. “Precipitation” means that ited form of neuromyelitis optica and
Page 8 The Transverse Myelitis Association
The Transverse Myelitis Association Page 9
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The Transverse Myelitis Association Page 13
Page 14 The Transverse Myelitis Association
The Transverse Myelitis Association Page 15
Reproduced from The Journal of Experimental Medicine, 2005, 202: 473-477. Copyright 2005 The Rockefeller University Press.
Page 16 The Transverse Myelitis Association
The Transverse Myelitis Association Page 17
Page 18 The Transverse Myelitis Association
The Transverse Myelitis Association Page 19
Page 20 The Transverse Myelitis Association
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Page 22 The Transverse Myelitis Association
The Transverse Myelitis Association Page 23

Reprinted with permission from John Wiley & Sons, Inc.

Page 24 The Transverse Myelitis Association
Acute Therapies for MS and Catastrophic MS: Subtypes
other Neuroimmunologic
Disorders
Brian Weinshenker, MD, FRCP
Mayo Clinic College of Medicine
Rochester MN

Adapted from a presentation given at the

2004 Rare Neuroimmunologic Symposium

This article will address the acute

treatments for MS and other neuroim-
munologic disorders. First, what is an
acute treatment? These are not the
treatments that are used to prevent fur- work by an anti-inflammatory seems that in the TM cases with rapid
ther attacks or to restore function in mechanism by stopping or suppress- deterioration, and where steroids have
people with chronic disabilities. Acute ing ongoing inflammatory activity. failed, plasma exchange is the best
treatments are given right at the time strategy, and we think that plasma ex-
that an attack of MS is happening, This graphic portrays two different change works by suppressing on-going
which is probably our best opportunity patient circumstances. In the first inflammation by removing pathogenic
to intervene in an effective way and case, graphic A, the patient experi- antibodies.
prevent disability. Obviously, the ences an acute worsening. Patients
other treatments are very important as in this scenario had been perfectly We have a hard time evaluating the ef-
well, but probably what we do right at stable, and then over a week or so, fectiveness of acute treatments, be-
the time that someone is experiencing develop a very severe neurological cause acute attacks often get better on
an acute demyelinating episode, espe- deficit; this is the case with many pa- their own. Even in patients who have
cially transverse myelitis, which often tients with transverse myelitis. They very severe attacks with acute demye-
does not lead to full spontaneous re- could get treated with steroids and lination, a significant percentage of
covery, is absolutely critical. many continue to have significant them get better even without any ther-
deficits. In graphic B, the patient ex- apy. That is good news, of course, but
We have not yet been able to define periences repeated mini attacks over it makes it more difficult for us to be
the circumstances in which the treat- the course of the year. This is what certain that the treatments we are ad-
ments are effective for an acute attack. we commonly see in MS patients. ministering have accomplished some-
We do not know from the individual Whether the patient deteriorates in a thing when we see the patient get bet-
patient characteristics who is going to very short period of time as in trans- ter. In the progressive type of MS,
respond to acute treatment. Regard- verse myelitis, or there is a step-wise there is a rather predictable progres-
less of how good our treatments cur- worsening, as in MS, both of these sion of disabilities. Ordinarily, the
rently are, they do not work for every- scenarios may lead to a bad result. legs are affected first, then the arms,
one. Ideally, we would like to under- and maybe cognitive function. We are
stand which patients respond, because Should the treatments in both situa- able to use a composite measure called
that would tell us a little bit about how tions be the same? Intuitively, I the EDSS which we often use in MS to
they work. When we understand how would think that in the case of pa- document the disability and measure
a treatment works, we are in a better tients who have ongoing inflamma- the improvement. In the case of acute
position to target the treatment to those tory disease activity (Graphic B - demyelinating attacks, there are more
who benefit, and also to optimize the MS); treatments that suppress in- diverse neurological deficits. It is a
treatment and look for additional treat- flammation would be most effective. harder to quantitate them with a single
ments that work by a similar mecha- In patients that experience rapid de- measure like the EDSS.
nism. terioration (Graphic A – TM); intui-
tion would lead one to think that a Although a patient might say, “I have
We have to define whether these treat- treatment that immediately protects myelitis,” from the neurologist’s per-
ments work directly on axons (nerve the injured nerve fibers and prevents spective it is important to understand
cells) protecting them from injury or them from deteriorating would be the the context in which the “myelitis” oc-
restoring their function, or do they most effective approach. The answer curs. A myelitis (inflammatory attack
is not necessarily a simple one. It in the spinal cord) occurring in the
The Transverse Myelitis Association Page 25
context of MS is often much less se- first reported in patients with MS in they had not recovered. They were
vere and more likely to get better on the early 1980s by Dr. Peter Dau of randomly assigned to receive real or
its own. When the myelitis occurs in Chicago. It was used primarily in sham exchange for two weeks. At the
the context of neuromyelitis optica or patients with progressive MS. It was end of that two weeks, we made a de-
idiopathic transverse myelitis, the also used in a small number of pa- cision whether they had improved or
prognosis is more guarded. It is im- tients who had severe attacks who not, and if they did not, they crossed
portant for us to not only determine did not respond to steroids, and it over and got the opposite treatment.
that someone has transverse myelitis, was rather controversial as to The patients did not find out until the
but to understand the context of the whether it worked. Some results entire clinical trial was over who had
overall disease. Knowing the disease were published that were positive, what.
type tells us something about the prog- while others were negative. There
nosis for the future. We are learning was a large, multi-center, controlled When the trial was concluded, we
that the pathology and also immunol- clinical trial performed and reported found that 42% of those patients who
ogy may well be different, and particu- in 1989 (Weiner et al. Neurology were receiving courses of active
larly in relationship to treatment with 1989). All of the patients in the plasma exchange improved, while only
plasma exchanges. study had acute MS attacks and were 6% improved who did not receive ac-
given ACTH (which is a form of tive plasma exchange (they received
I will be presenting about four acute steroids) and they were given cyclo- sham treatment). We required a very
treatments. These four are representa- phosphamide (which is a chemother- robust measure of improvement. We
tive of the treatments that we apply in apy). We generally do not adminis- were not interested in minor improve-
the acute setting. The first treatment I ter both in this fashion for acute at- ment. We required a moderate to
will discuss is corticosteroids. We tacks of MS. Additionally, they were marked improvement in the targeted
have used corticosteroids for some randomized to either receive real or deficit. We had five patients who
time; they are very effective and are sham plasma exchange. The end re- were getting sham treatments, and they
generally our first line treatment. sult was that there was no convincing got no better. These patients then
When corticosteroids fail, we turn to difference whether or not the patient crossed over after two weeks and
plasma exchange, IVIG or immune had received real or sham plasma ex- started getting the active treatment. Of
suppressive agents, such as cyclophos- change, although there was maybe a course, because of the way the trial
phamide (historically, the agent most hint in those patients with the most was designed, we did not know which
widely applied in demyelinating dis- severe attacks who had relapsing re- they were getting at the time. Three of
ease). mitting MS, that there might be a these five patients, after two weeks of
benefit. receiving the active treatment, im-
Corticosteroids are well established proved. This was very convincing evi-
and well accepted to be effective. The We did not believe that this study an- dence of the effectiveness of plasma
data from multiple clinical trials is that swered the question as to the effec- exchange. All of the patients who im-
at the end of three to six months, most tiveness of plasma exchange, so proved in this study maintained the
patients get better whether you gave Mayo Clinic initiated a randomized, improvement.
corticosteroids or not. Thus, it is diffi- double-masked, crossover, sham
cult to demonstrate that the percentage controlled study among steroid treat- The next graphic represents our ex-
treated with steroids is any different ment failures. PLEX was studied as perience with plasma exchange at the
than those not treated with steroids – a monotherapy; it was not combined Mayo Clinic; 59 patients that we re-
when you look at all patients with at- with other therapies. It was a very viewed between 1984 and 2000. The
tacks of demyelinating disease. There selective clinical trial involving 22 graphic identifies the diagnoses of pa-
is no doubt that they shorten attacks, patients, all of whom had acute, very tients that we treated at Mayo with
but it is difficult to be certain as to severe demyelinating disease. A va- plasma exchange, the most common of
whether they make a real difference to riety of demyelinating syndromes which was relapsing-remitting MS.
the ultimate outcome. And this is an were included in the trial. Some pa- The next most common was acute dis-
important point. When we did the tients had MS, some transverse mye- seminated encephalomyelitis, followed
plasma exchange study, we did not litis, and others had what we call by acute transverse myelitis and then
look at all patients. We admitted only Marburg’s variant of MS; this is a neuromyelitis optica. The remaining
those patients who had severe attacks type of MS that presents in the brain categories of demyelinating disorders
and had failed treatment with steroids. with a large tumor-like lesion. All of represent much smaller numbers of pa-
the patients in the trial had failed tients.
Plasma exchange (PLEX) had been steroids. After at least three weeks,
Page 26 The Transverse Myelitis Association
Diagnoses of Patients Treated with Plasma Exchange 1984-2000 ments. A group at the University of
Vermont published a paper on their
experience with one patient (Mao-
Draayer et al. Neurology 2002; 59:
1074-77).

They looked at imaging (next page);

this patient had an acute cerebral de-
myelinating event. The patient got
steroids, the enhancement or the leak-
age of dye got better, but the patient
had not clinically improved and they
still had a huge lesion. The patient
then received two weeks of plasma ex-
change and as is evident from the im-
ages, the lesion substantially im-
proved.
Of the four most common diagnoses sues raised is that the treatment of an This table summarizes a series of pa-
that we treated at Mayo Clinic, our acute attack with PLEX does not do pers reporting about experience with
best response to PLEX has been in the anything to address recurrent attacks. PLEX. The first results are published
patients with neuromyelitis optica; My response to this issue is that in the Journal of Neurology by a group
60% (6 out of 10) have experienced a while we are worried about what the led by Dr. Neil Scolding (J Neurol
moderate to marked improvement. future holds for a person who has ex- 2004 251: 1515) from Bristol, UK.
Among other categories of patients, perienced a severe attack, our imme- They report on six consecutive pa-
and these were primarily patients that diate concern is focused on the cur- tients, which represents all of the pa-
were not in our clinical trial, the favor- rent acute episode and preventing as tients they have treated with plasma
able responses to PLEX were as com- much damage as possible from this exchange. One patient had transverse
mon (42%) as we had reported in our attack. myelitis, one with neuromyelitis op-
study. Some people always think that tica, and four with MS. Six out of six
patients in clinical trials usually do No one outside of Mayo Clinic has experienced what they consider a ma-
better than those treated in regular performed a randomized controlled jor improvement. The degree of im-
practice outside of a clinical trial. Our study to replicate or confirm the provement from their EDSS varied
experience outside of our clinical trial benefits of plasma exchange. How- from 0.5 to 4.5.
mirrored our experience from the ever, there have been people who
study. have adopted the treatment paradigm The results from Spain, published in
of using plasma exchange in the case the Revisita de Neurologia 2003: 37:
The results of our clinical trial have re- of acute severe attacks in which ster-
ceived intense scrutiny and there have 917 by Dr. Meca-Lallana et al in-
oids have failed to result in improve- volved eleven patients. Nine of the
been concerns raised. One of the is-
Proportion of Patients with Moderate to Marked Improvement
patients had MS, one had transverse
myelitis, and one had ADEM. As to
their syndromes, they had paraplegia,
ataxia or dysphagia. Of the 11 pa-

Plasma Exchange: Further International Experience

The Transverse Myelitis Association Page 27
Clinic study we have had a number of
people that have not improved.
What have these investigators reported
Baseline about their experiences with plasma
exchange? Meca-Lallana indicated
that, “Its use should be considered as
first line in severe relapses and in
swiftly progressing forms [of MS] that
do not respond to intravenous methyl-
prednisolone.” (Revista de Neurologia
Post 2003; 37: 917-926).
Steroids The Bristol group concludes, “Our
study supports the use of plasma ex-
change in cases of severe steroid-
insensitive demyelination of the
CNS.” (J. Neurology 2004).
The following was published by Dr.
Post Panitch’s group in Vermont: “This pa-
PLEX tient’s rapid clinical and MRI response
suggests that plasma exchange may be
beneficial in this disorder, and could
perhaps serve as a diagnostic tool to
avoid the need for brain bi-
Mao-Draayer et al. Neurology 2002; 59: 1074-77. opsy.” (Neurology 2002; 59: 1074-77).
His conclusions go further than I
tients, 7 of them experienced major received steroids and this treatment would have in regard to avoiding the
improvement after one month. failed. As the graph demonstrates, need for brain biopsy. He suggests
after receiving plasma exchange, a that if the patient responds to plasma
A study on treatment of ten patients large number of patients had im- exchange that proves it is demyelinat-
with severe optic neuritis in Germany provement in their vision and all of ing (inflammatory).
(Neurology 2004; 63: 1081) showed a them maintained that improvement
similar high rate of success. after plasma exchange was com- Regarding their study of optic neuritis,
pleted. Some with the very worst Ruprecht et al state, “We therefore fa-
These were not just patients with mild vor the hypothesis that plasma ex-
visual deficits did not improve. Of
optic neuritis; these were patients that change had a therapeutic effect in our
course, as I mentioned, in our Mayo
were generally blind in one eye. They series and propose a larger prospective
Plasmapheresis in severe optic neuritis controlled trial to address this.”
K. Ruprecht et al., Neurology im Druck (Neurology 2004; 63: 1081).
Based on the available data, I would
use plasma exchange on the patient
with an acute severe attack (A) as op-
posed to a patient who has ongoing re-
peated smaller attacks of inflammatory
disease activity (B) for whom the goal
would be suppression of ongoing in-
flammation.
Why do some patients respond to
plasma exchange, while others do not?
We seem to see an all or nothing re-
sponse. Either there is an excellent re-
Page 28 The Transverse Myelitis Association
Catastrophic MS: Subtypes Cyclophosphamide Studies in Rapidly Progressive “Transitional” MS

One clear-cut answer seemed to ways, including binding to other anti-

sponse or no response. That result come from one of my colleagues, Dr. bodies that may be deleterious, bind-
tends to suggest that there should be Lucchinetti. Working with Dr. ing to macrophages and interfering
some simple explanation. We have Keegan, also at Mayo Clinic, she with their function. Macrophages are
not seen partial responses or a whole looked at patients with MS who un- among the most common cells in in-
gradient of responses; that would sug- derwent plasma exchange and had flammatory infiltrates. It is known to
gest a more complex or multi-factorial brain biopsies. Dr. Lucchinetti clas- bind complement components. It also
explanation. Thus far, clinical predic- sified these patients into one of three binds to B-cells and maybe by cross-
tors of response are weak. We looked different pathological types. Pattern linking them leads to cell death of
at a number of clinical predictors and II is a pattern associated with anti- these B-cells. We know from a con-
we did find that those patients who had body deposition in the brain. Every trol study, that as is the case with inter-
lost all of their reflexes had a poor re- patient who had pattern II, the anti- feron use, IVIG reduces attacks and
sponse. We also found that women body mediated form of MS, re- the numbers of MRI lesions in relaps-
did not do as well as men. Whether sponded to plasma exchange, and ing remitting MS. A recent European
that will hold up or not, I do not know. none of the patients with the other study demonstrated that it is not effec-
Time to treatment was not strongly patterns of MS seemed to respond. tive in secondary progressive MS.
predictive of response. The time be- Fortunately, these other forms of MS There have been no clinical trials of
tween the attack and when the patient are less common. Type II pathology IVIG treatment in MS. There are a lot
was treated with plasma exchange did seems very predictive of outcome to of anecdotal reports of patients who
not seem to have an impact on their re- plasma exchange treatment. It points have ADEM who have failed treat-
sponse to the treatment. It was again to the importance of trying to ment with steroids and seem to re-
thought that maybe if they were identify those patients who have anti- spond to IVIG. Some of this series of
treated really quickly, they might do body-mediated disease. It seems to patients who have been diagnosed with
better than if the treatment were de- be a common situation in patients a limited form of ADEM, I would
layed by days or weeks. There may be who have these acute severe forms of have called transverse myelitis. It
some truth to that, but we saw people disease. would be interesting to consider IVIG
even three months out who were doing as an alternative to plasma exchange,
well. So, that was not the whole ex- The next treatment I will discuss is but it needs to be tested before it is ac-
planation. IVIG or intravenous immunoglobu- cepted. Until a proper comparative
lin. IVIG works in a number of study is done, I do not recommend
IVIG as a first line treatment; we do
Response versus Pathology have the data to demonstrate the effec-
tiveness of plasma exchange.
Cyclophosphamide, as I mentioned
earlier, was used as a standard treat-
ment for attacks in all of the patients
who were in the controlled trial of
plasma exchange by Weiner et al in
1999. There is less evidence to sup-
port the use of cyclophosphamide for
acute attacks of MS and this is a much
less commonly employed acute treat-
ment.
The Transverse Myelitis Association Page 29
Cyclophosphamide has a controversial Acute Therapies for Another stage in the disease process
history for use in progressive MS. Transverse Myelitis involves chronic degeneration. After
Some of this controversy may be due Benjamin Greenberg, MD, MHS the inflammation is gone, there can be
to the fact that progressive MS is het- Assistant Professor, changes to the nerves that occur over
erogeneous. Some patients deteriorate Department of Neurology time. Thus, there is a window of op-
because of gradual nerve fiber dropout Johns Hopkins School of portunity during the acute phase to
in primary progressive or secondary Medicine limit the extent of damage and then the
progressive MS and others seem to ex- Co-Director of the Johns Hopkins disease process changes. Finally, the
perience a rapidly worsening inflam- Transverse Myelitis Center body does perform some repair
matory form of the disease that is (endogenous repair). This is good
sometimes called transitional MS. A news. In the case of the demyelinating
number of relatively small studies in Adapted from a presentation given at the disorders, the body will re-myelinate.
that select group of patients with rap- 2006 Rare Neuroimmunologic It is never as good as the original, but
Symposium
idly progressive, transitional MS, who it helps. Thinking about these differ-
have a large number of gadolinium- ent stages of the disease -- acute in-
enhancing lesions on MRI have dem- This paper examines the role of vari- flammation, chronic degeneration, and
onstrated impressive results with ous acute therapies for neuroimmu- then repair – also helps us to think
cyclophosphamide; a high percentage nologic disorders that affect the spi- about the different areas in which we
of patients are apparently stabilized or nal cord. I would like to begin my can intervene with treatments which
improved. However, these are uncon- discussion by talking about these could result in better outcomes for pa-
trolled studies (no control group); therapies in the context of the stages tients.
nonetheless, they are believable and do of disease common to various neuro-
fit with my experience. immunologic conditions. One of the The different stages of immune medi-
stages is acute inflammation. Acute ated disease - acute inflammation,
I have reviewed four different treat- inflammation involves the infiltration chronic degeneration, endogenous re-
ments for acute inflammatory attacks of immune cells into the nervous sys- pair - each represent a new opportunity
in MS and other neuroimmunologic tem. These are cells that do not be- to intervene with different strategies to
disorders, concentrating on plasma ex- long in the central nervous system treat the disease. The disease process
change. In conclusion, we need better and which act on neurons and glial begins with the trigger; what causes
ways to define what we mean by acute cells in a deleterious way. This proc- the acute inflammatory attack. What
MS and a better understanding of the ess is complex in that there are a va- would be most ideal would be for us to
mechanisms involved in acute MS. riety of factors that are secreted by identify those triggers and avoid them.
This understanding would help us to these cells and we are studying the If we could identify the inciting
better comprehend how the treatments roles these different factors play in events, we could develop a strategy for
we are applying really work. Do they the acute injury within the nervous avoiding them or altering the way our
work by suppressing active disease system.
and inflammation, enhancing nerve
function, or by preventing nerve cell Interventions
death (i.e., neuro-protective)? Corti-
costeroids are the standard first line Avoidance
treatment for inflammatory attacks. If Vaccines
there is a steroid refractory attack
(steroids fail to result in improve-
ment), we suggest the use of plasma Anti-inflammatories
exchange. In those cases of rapidly Neuroprotection
worsening, fulminant MS (the step
wise worsening that was displayed in
the previous graphs as patient B), im-
Neuroprotection
muno-suppression with agents, such as Prevent Recurrence
cyclophosphamide or mitoxantrone, is
probably the best strategy at the pre-
sent time.
Promote Repair
Repair it Iatrogenically
Page 30 The Transverse Myelitis Association
bodies respond to them. This is called these various therapies. Thus, these idea of a critical window of opportu-
prevention. For example, everyone recommendations will be based on nity for treating neuroimmunologic
gets a measles vaccine or a tetanus our experience at the Johns Hopkins disorders.
shot, because you can avoid these dis- Transverse Myelitis Center. The
eases altogether. To do so, however, focus is on what we can do to im- So what are the goals of acute therapy?
you have to find the trigger. prove outcomes for people who ex- We want to limit inflammation in or-
perience these inflammatory attacks. der to prevent cells from infiltrating
The next opportunity for intervention the blood-brain barrier. We also want
is the stage of acute inflammation. In thinking about the goals of acute to eliminate components of the im-
Acute inflammation presents the first therapy, I am going to draw an anal- mune system that are in inappropriate
opportunity for these neuroimmu- ogy to how we have approached the places. Another goal we have in acute
nologic disorders, because we have not treatment of patients with acute therapy is to limit the effects of sub-
yet identified the triggers. When we strokes. There has been a major pub- stances that lead to nervous system
see a patient who is in the early stages lic health campaign for the last dec- damage. We want to directly inhibit
of acute inflammation, we have to rely ade to raise awareness in the popula- substances that are neurotoxic. We are
on various strategies to limit the in- tion about the symptoms and signs of learning from the work of Dr. Adam
flammation. Another approach we a stroke. We learned that people Kaplin, that we want to inhibit IL-6 in
could adopt is neuroprotecton. This knew the signs and symptoms of a the case of Transverse Myelitis. In the
strategy involves putting a shield heart attack. If a person experienced case of Devic’s, we are learning from
around the neuron to protect them sudden chest pain radiating down the Mayo researchers that we might
from the immune cells that have infil- their left arm and shortness of breath, want to inhibit NMO-IgG; the circulat-
trated the nervous system. Ideally, the they would come to the emergency ing antibody that may be causing dam-
neurons would be protected from dam- room. They would get evaluated for age. Finally, we want to protect the
age until the inflammation has been the heart attack within a reasonable nervous system. Neuroprotective
resolved. amount of time. What we found is strategies aim to shield neurons from
that a lot of patients who were hav- damage even in the presence of in-
When thinking about intervention ing symptoms of stroke: numbness, flammation.
strategies during the stage of chronic weakness, slurred speech, sat at
degeneration, we can employ neuro- home for hours or days waiting for it Turning now to the mechanisms of
protection, as well as the prevention of to get better. By the time they made action for the acute therapies, I will
recurrence. For patients with Multiple it to a doctor, there was little we begin with a discussion of steroids.
Sclerosis, Devic’s, or recurrent trans- could do to help them. When the There are several mechanisms of ac-
verse myelitis, after the first attack we neurology and neurovascular com- tion for these drugs. First, steroids
focus on the patient’s symptoms and munity developed the drug TPA that dampen the inflammatory profiles
work to improve their functional abil- could be used to reverse the symp- from the cells (the cytokine cascade).
ity. We then focus on preventing the toms of stroke if given within a cer- Cytokines are proteins that can dam-
disease from coming back. Finally, tain window of opportunity (three age the nervous system. The steroids
during the stage of endogenous repair, hours from the onset of symptoms), are used to shut down their production.
we want to focus on treatment strate- it sparked a massive public health Secondly, steroids stop T-cells and B-
gies that we could use to promote campaign to teach doctors and pa- cells from activating in the first place.
natural healing processes within the tients about the signs and symptoms Third, steroids decrease the extravasa-
body. We are also interested in strate- of stroke. Now, most people are tion of immune cells into the central
gies to repair the nervous system iatro- savvy enough to know that if they nervous system. They diminish the
genically through the use of stem cells suddenly, become weak on one side number of cytokines floating around
or other cell mediated systems where of the body, they should probably and decrease the number of cells get-
we can regrow or reconnect the nerv- contact their doctor or go immedi- ting across the blood-brain barrier.
ous system. ately to an emergency room, because Finally, steroids actually kill off some
they have three hours of opportunity of the activated immune cells by facili-
The remainder of this paper will focus to minimize the effects of stroke. It tating the apoptosis of activated im-
on acute inflammation, specifically, was the acute therapy that was driv- mune cells. Apoptosis is the self-
the goals of acute therapy, the strate- ing the public health campaign, and destruction of cells. We do not want
gies for acute therapy and the mecha- the acute therapy that was driving the these immune cells attacking the nerv-
nisms of action of various drugs. There professional education campaign. ous system. Thus, steroids have a va-
have been no large controlled trials of We need to begin to apply this same riety of mechanisms for achieving
The Transverse Myelitis Association Page 31
these therapeutic goals. Steroids, over mechanism to try and get rid of it. is occurring, because of the procedure
the short term, are considered quite This procedure is not universally involved. It has been done, but it is
safe, but can cause mood changes, available and requires that a patient difficult to do in a controlled fashion.
sleep disturbance, elevated blood sug- be near a facility that has the ability Another problem with designing stud-
ars and slight risks of infections. to offer it. The risks of PLEX in- ies involves the heterogeneity within
clude the risks associated with place- these disorders, which obscures the
Next, I will describe intravenous im- ment of the central line; infections, data. There are a number of types of
munoglobulin (IVIG). Immunoglobu- bleeding (because clotting factors are MS and there are a number of types of
lins are antibodies. IVIG is pooled removed along with the antibodies) TM. There is great variability within
antibodies from thousands of donors. and electrolyte changes. the classification of each of these dis-
When a patient gets an IVIG infusion, orders and there are differences be-
they are getting exposed to a massive Finally, another option is the use of tween patients or subsets of patients.
amount of antibodies. The idea is that cyclophosphamide (Cytoxan®). This How are we going to define the group
these antibodies will do several things. is a chemo-therapeutic agent to be studied? Finally, outcome meas-
They neutralize pathogenic antibodies. (alkylating agent) that destroys the ures are limited. How do we decide
There may be antibody-antibody inter- proliferating cells of the immune sys- whether an acute therapy has suc-
actions; and the ‘bad’ ones may be tem (lymphocytes). While its effects ceeded or not?
obstructed by the antibodies we are on the immune system are profound,
infusing. They may suppress patho- caution must be used due to the po- I am going to share our experience at
genic autoantibody production. This tential for complications, such as low the Johns Hopkins Transverse Myelitis
may work like a feedback response. blood counts, infections and bleeding Center with our acute treatments of
By flooding the body with antibodies, within the bladder. TM. While we have found significant
the cells in the body that make anti- trends among our patients, caution
bodies may get a signal to shut down It would be great if we had a well must be used because these observa-
and stop producing, because there are designed and proven strategy for tions are not based on controlled stud-
now more than enough antibodies pre- treating people who have attacks of ies. For each situation, individual
sent from the infusion. There are a transverse myelitis, Devic’s or NMO strategies must be devised.
variety of other possible ways that with defined approaches based on a
IVIG gets rid of pathologic antibodies, clear set of criteria. We have been We have noted that some features
including the acceleration of native trying to achieve that goal for years, about patients that present with acute
IgG degradation, the inhibition of but we encounter significant difficul- transverse myelitis might be useful for
complement binding, the blockage of ties when designing acute strategies. predicting which treatment strategy
Fc binding mediated phagocytosis, the There are a number of problems we they will likely be responsive. There
interruption of antigen recognition and face when trying to put together trials are clinical features about the patient
the suppression and neutralization of to prove the safety and efficacy of that must be taken into account. The
T-helper cell cytokines, metallopro- acute therapies. First, there have level of disability at the time of pres-
teinase and chemokine production. In only been a very limited number of entation is most critical. The Ameri-
general, IVIG is very safe, but it has clinical trials. We have very little can Spinal Injury Association (ASIA)
the potential to cause allergic reac- information from trials, and thus scale is a clinical tool used to define
tions, headaches, and kidney and lung have limited guidance in developing the level of dysfunction in the setting
problems. future trials. Designing prospective, of spinal cord diseases. Patients are
blind trials for these therapies is dif- ‘scored’ in terms of their motor, sen-
Another strategy for treating acute in- ficult. The neuroimmunologic disor- sory and bowel/bladder function.
flammation is plasma exchange ders are rare. It is hard to power a They are given a composite letter
(PLEX) or plasmapheresis. PLEX study with very few patients in a score of A, B, C, D or E. On this
involves inserting a ‘central line’ – a study. Recruiting enough people into scale, an ‘E’ is normal and an ASIA
special IV placed into a large vein and a study to prove that something is ‘A’ patient has complete loss of func-
then being hooked up to a machine statistically significant is difficult to tion below the level of the spinal cord
that cleanses or filters the blood. The accomplish. injury.
process takes about two hours. Blood
flows out of the body, is filtered and Further, it is difficult to successfully In our experience, patients who are
then is returned to the body. If there is blind patients and physicians. For ASIA ‘A’ at nadir (at their worst) re-
an antibody moving around in the sys- instance, it is hard to blind a patient spond significantly better to regimens
tem that is causing problems, this is a as to whether or not plasmaphoresis that include cyclophosphamide, re-
Page 32 The Transverse Myelitis Association
gardless of other factors. Patients who Managing Neurogenic address some of the therapy options.
are non-ASIA ‘A’ (not complete) do Voiding Dysfunction
not necessarily have improved out- E. James Wright, MD Two functions of the lower bowel and
comes from the addition of cyclophos- Assistant Professor of Urology bladder are storage and emptying. It
phamide to their regimen, and may Johns Hopkins University sounds simple, but it is quite complex.
not need the risk of cyclophosomide. Director of Neurourology, The Both of these roles are active neu-
They may get a benefit by just provid- Johns Hopkins Bayview Medical rologic processes. The bladder doesn’t
ing steroids and plasma exchange, and Center just sit by passively and fill with urine.
not going on to a regimen that includes It actually has to have neural input in
cyclophosphamide. order to do that properly. The same is
Adapted from a presentation given at the true for bladder emptying. These
We have also identified another group 2004 Rare Neuroimmunologic functions are driven both by reflexive
Symposium
of patients who seem to have a selec- and conscious control.
tive response to regimens that include
This article will review the kinds of
cyclophosphamide; patients with spi- Through childhood, we develop or
voiding problems that can result
nal cord inflammation in the setting of learn behaviors to coordinate this void-
from neuropathic conditions, such as
an autoimmune disorder. Some pa- ing cycle in response to various stim-
TM and MS, as well as the range of
tients with diseases, such as Lupus and uli. We come into the world with very
available options for the treatment of
Sjogren’s syndrome have transverse little conscious control of voiding.
these problems. These treatment
myelitis as a manifestation of their Night or day the bladder fills and
options are focused on accomplish-
disease. Still other patients with trans- spontaneously empties in a coordi-
ing three important goals. The first
verse myelitis have evidence of im- nated fashion. As we age, we gain
goal is to be sure that in issues of
mune system dysfunction without greater conscious control. Between age
voiding dysfunction we are preserv-
meeting criteria for specific diseases. two and age seven, most of us have
ing kidney function. Renal preserva-
Thus, when a patient presents with learned to coordinate voiding in re-
tion is the priority; ensuring that
transverse myelitis we will routinely sponse to social cues, time of day, and
there isn’t some silent problem af-
screen for a group of auto-antibodies. various afferent stimuli.
fecting the kidneys somewhere in the
If these tests are positive, they are in-
background that’s going to give us
dicators that a patient will have a pref- This is a simplified schematic of the
additional trouble. We only get two
erential response to regimens that in- innervation of the lower urinary tract.
kidneys; we need to take care of
clude cyclophosphamide. The system requires intact circuitry
them. Secondly, we want to make
from the brain all the way to the tip of
sure that one has adequate conti-
In the absence of these criteria, we the spinal cord. There is a great deal
nence and control of elimination
routinely use intravenous steroids, of interaction and there are many inter-
functions. My article is focused on
PLEX or a combination of the two. connections of the circuits along the
bladder function, but I will also ad-
While these recommendations are not spinal cord. The cerebral portion of
dress some of the issues surrounding
based on controlled trials, they can be this system is primarily located in the
bowel function. Many people with
used to help guide therapy. Most im- anterior frontal gyrus. Some people
TM understand that bowel function
portant, however, is the institution of who have experienced a stroke (post
can sometimes be the more difficult
some therapeutic intervention as soon CVA) can have difficulties from
problem to manage. Our third goal
as transverse myelitis is recognized - changes in this area of the brain. Like-
in treatment is to maximize one’s
time is cord. A spinal syndrome has wise, there can be blood flow changes
independence in managing these is-
to be recognized; the diagnosis that it in the brain, in connection with MS
sues. It takes some creativity, under-
is inflammatory has to occur rapidly. and various neuro-degenerative proc-
standing, vigilance and patience to
We have to risk-stratify the patient and esses, that can affect voiding function
try and work through some of the
pick the treatment in a reasonable in subtle ways.
experiments we will go through to
amount of time in order to protect as
find the most effective treatments for
much of the spinal cord as possible. These brain functions are orchestrated
problems associated with TM.
through the pontine micturition center.
This is the coordinating system in the
This article will provide a brief re-
brain. The system is then patched
view of the physiology of voiding
through the sacral reflex arcs through
and various strategies for evaluation
S-3 and S-4. These are located near
and treatment planning. It will also
the base of the spinal cord. As I noted
The Transverse Myelitis Association Page 33
Innervation of the lower urinary tract: Impact of Bladder Dysfunction on Quality of Life
control of micturition

many places for miscue. I am always Regardless of where the patient is on

impressed by the variability of func- this continuum of dysfunction, our
tion in patients I see in the TM Cen- treatment strategies focus on making
ter. There can be many subtle or se- the system cooperate in a much more
previously, these are mediated by the
vere changes and the patchy nature friendly way in order to restore quality
autonomic functions; the autonomic
of TM can be tricky. of life.
leads to the parasympathetic and the
sympathetic nervous systems. The
With voiding, timing is everything. The degree of bladder dysfunction or
parasympathetic system drives bladder
With normal nerve function there is a pelvic dysfunction does not always
contraction and emptying while the
balance between inhibition and fa- mirror the other deficits in TM. There
sympathetic side is responsible for
cilitation. The graph represents the can be preservation of large limb mo-
relaxation and urine storage. This is in
two extremes. On the one end, in- tor function and balance with a real
turn wired into an afferent feedback
sults in the neural circuitry lead to discoordination of pelvic function; and
system, to give us some interplay with
poor emptying or at the extreme, uri- the complete reverse can also occur.
our environment. Unfortunately, the
nary retention. The system is too The degree of bladder dysfunction
bladder doesn’t have a wide range of
inhibited. On the far end there is does not always mirror recovery ei-
sensations to give us. It gives the fol-
urinary frequency and reflex voiding ther. There is a capacity for nerves to
lowing messages: I have to go, I really
without our participation or consent. regrow and rewire some of the cortical
have to go and I have pain. That’s
The system is over facilitated. Our function to try and heal some of the
about as subtle as it gets. Trying to
goal is to get back to the normal bal- function. I have great hope that we
make sense of those messages in the
ance. will find ways to push the healing
context of everything else can be a
process forward. My role today is to
challenge.
The bladder can be pushed in either get around the damage that has been
direction from injury caused by TM caused and to find ways to get past the
The length of these circuits, the com-
or MS. Treatment starts by deter- effects. It would be preferable to be
plexity of two limbs, and involvement
mining which end of the spectrum able to cure those effects; to fix the
of both conscious and autonomic func-
the damage has moved the patient. circuitry rather than the manifestations
tions create a complex system with
of the impaired circuitry. I think we
Voiding dysfunction; timing is everything will get there.

It is important to highlight the impact

of bladder dysfunction on quality of
life. Bladder dysfunction can affect so
many different areas. Physical activity
may be limited. There can be occupa-
Page 34 The Transverse Myelitis Association
tional issues regarding adequate toilet- We ask the patient for a period of a lot of repetitive action; the learning
ing facilities or permission for too fre- twenty-four to seventy-two hours to requires effort. In the background
quent voiding. There are domestic write down their experience of toilet- there is a lot of neural change going
issues involving the expense of using ing: the date, the time, the amount on, and we can influence and drive this
special underwear, bedding, pads and voided, and some cataloguing of change with hard work and commit-
clothing. Bladder problems can seri- leakage episodes, if these occur. ment.
ously limit social interaction and travel This information provides a picture
opportunities; people with these issues of where we are starting from and There are additional sophisticated tests
may withdraw from these social con- what improvement we need to that can be done. Post-void residual
nections. Finally, there are psycho- achieve. This information also helps checks provide useful information and
logical implications including loss of the patient in thinking about bench- can identify how well or how effi-
self-esteem and the fear of accidents. marks. The patient can consciously ciently the system is working. Urody-
These psychological issues are often identify where they are in the process namic testing is a functional study; the
exacerbated by depression associated and with diligence, effort and prac- real “get under the hood” type of test
with these neural effects. tice, what they might achieve in the for bladder function. For patients with
way of improvement. neural injury, it is probably the most
In order to treat a problem one has to important component of the evalua-
first define it. Then one can begin to In thinking about this process, it is tion. Cystoscopy has a limited role in
think about strategies for improve- instructive to consider this in terms the evaluation. This visual examina-
ment. The process begins with finding of the original toilet training process. tion of the bladder interior does not tell
a urologist who has concern for these This isn’t something that is accom- us much about the function of the sys-
conditions. It is important to find a plished automatically or overnight. tem, but it often is done to exclude
doctor who is willing to collaborate, As a young child, we actually have to other potential problems.
who is enthusiastic about taking on work at it. If we injure that system
these issues, who has a focus in their later on in life, we have to go back This graphic is a depiction of a urody-
practice on these neurological issues and replicate that phase and relearn namics lab. A video urodynamics test
and who has the mindset to find com- the process. We know from experi- basically involves an x-ray unit, a C-
prehensive solutions. Not every one mental work that there is axonal arm fluoroscopy unit, a computer or
does, but there are many urologists in sprouting or some neural plasticity CPU system, a flow meter, and a set-
the country and it’s worth requiring all after injury; the system is driven to up to measure the pressures inside of
of these criteria of your physician. try and get back to normal function. the bladder. The test involves cathe-
For any of you who have played a terization of the bladder and the rec-
The evaluation process begins with a sport or a musical instrument, you tum to measure abdominal pressure
number of screening questions and appreciate that this learning requires and bladder pressure during a recapitu-
taking a medical history. We want to
Urodynamic Testing
understand certain issues, such as the
frequency of voiding, what prompts
leakage, what is the experience of
voiding, if there is any pain, or if there
is night time wetting. We perform a
physical examination to determine the
neural integrity of the pelvis, focusing
primarily in the sacral region, per-
ineum, and peri-anal region. We con-
duct a urinalysis, looking to exclude
such issues as infection, chronic cysti-
tis or stones. It is important to main-
tain the general or overall urologic
health of the patient while we try to
get into the subtleties of the neurologi-
cal problems.

One of the most helpful tools we can

use involves keeping a voiding diary.
The Transverse Myelitis Association Page 35
lation of the voiding cycle; the filling When it comes to therapy options for there is a tremendous amount of over-
of the bladder and the emptying of the bladder dysfunction, there is not a lap between the pediatric and adult
bladder. We get a lot of information “one size fits all.” This is particularly situations. One of the significant dif-
from this test. We can measure the the case with the neuropathic issues ferences is that for young people, there
flow rate; how well and how quickly associated with TM. We need to is a much greater degree of neural
the bladder empties. Simultaneously, match therapy with the individual’s plasticity; the ability for those systems
pressure measurements identify if needs and abilities. There is a wide to rewire and heal. It is for this reason
there is bladder weakness or if there is range of possible abilities based on I think we should exercise a degree of
obstruction or discoordination. We the effects of this condition and each conservatism in our treatment deci-
can measure an EMG signal to assess situation is unique. Again, we are sions knowing that there is this store-
whether the neural control of the looking to assemble a therapy strat- house of potential for change over a
sphincter or external valve is intact egy that addresses our primary goals: long time horizon. We should try to
and to determine if it is over active or preservation of kidney function, es- manage problems to create stability for
under active. We then obtain meas- tablishment of continence or ade- as long as possible, and to see if this
ures of filling to understand bladder quate emptying; and maximizing potential for improvement is realized
capacity. The C-arm unit gives us an independence and quality of life. It as these children develop.
actual picture of the system and tells is important to keep in mind that we
us whether there is reflux into the kid- are using management strategies at I need to mention that some of the
neys or if there is a diverticulum. This the present time, and not a cure strat- strategies I will be talking about are
test provides us with a range of infor- egy. We don’t yet have the ability to off-label. This doesn’t mean that these
mation that helps us to understand cure the neural damage which causes strategies are not acceptable. I believe
what is going on. bladder dysfunction. There are the approaches I am presenting are
things we can do to help the body safe. We have been using them for
The need and importance for urody- heal itself, and to implement a man- years and continue to use them.
namic testing stems from the fact that agement strategy that, at the least,
the bladder is a poor witness. We are keeps the system functioning as nor- Referring back to the spectrum of neu-
able to see the manifestations of some mally as possible. Over the course of ropathic voiding dysfunction, most
symptoms, but that doesn’t always tell time, if there are breakthroughs and people with problems tend to end up
us what’s really going on physiologi- discoveries, we want the system on one side of the fence or the other.
cally, and especially in the context of a primed and ready to accept restora- People are either on the poor emptying
neuropathic problem. This is really tive therapies. and retention side or they are on the
the only way one can get at the heart hyperreflexia and overactive side. I
of the matter. We can define the ac- Finally, therapy strategies have to am going to describe therapies for
commodation or compliance of the include the caregivers. As many of each, beginning with the hyperreflexia
bladder; how elastic is the bladder? you know, this is often times a team side. This over activity can range
Does it respond in the relaxation or effort. Management recommenda- from urinary urgency and frequency to
storage phase the way it should? If it tions have to include a clear under- urge incontinence.
doesn’t, this is one of the problems standing of what will be required,
that can cause harm to the kidneys. and who will be required to assist in The cornerstone and initial approach is
This is not common, but we need to be the care. All of these factors need to behavioral modification and this is true
on the lookout for this issue. We are be considered and discussed with the also for people who don’t have a neu-
trying to assess sensation during the whole team in order to arrive at the ropathic source for their voiding dys-
filling process and voiding process. best and most effective plan. If the function. This behavioral modification
We are determining residual volume, physician has not adopted this prac- is a very diligent and directed effort at
the capacity of the bladder and tice, the patient and caregivers need trying to coordinate, relearn or retool
whether or not there is spontaneous to advocate for this approach. the toileting processes. This includes
activity. We are looking at the coordi- pelvic floor retraining and reeducation.
nation and competence of the sphincter The basic principles for bladder man- I will talk about Kegel’s exercises and
valves. At the end of the study, we are agement are the same for pediatric a number of medications that can be
assessing the voiding pressures and and adult cases. The field of urology used with oral, transdermal, or intrave-
flow efficiency. This test allows us to has separated the specializations with sical delivery systems.
understand the symptoms and their some practices focused on adults and
causes. some focused on pediatric urology. There is a role for biofeedback, electri-
From a neuro-urology standpoint cal stimulation, magnetic stimulation,
Page 36 The Transverse Myelitis Association
where it does. The capacity within (Andersson KE. BJU Int. 1999;
us to consciously bend this system to 84:923-947). Oxybutynin comes in a
our will cannot be underestimated. sustained release oral form, a transder-
mal or patch form, and there is work
Behavioral modification includes being done to deliver the medicine
pelvic floor exercise or the classic intravesically. This was the original of
Kegel contraction. these medications developed in the
seventies. It is still around and still
This contraction of the pelvic floor effective. Darifenacin, Solifenacin
and physical therapy. There are ex- muscles was initially developed by and Trospium are also effective.
perts in pelvic floor rehabilitation, and Kegel in the fifties as a therapy for
there appears to be some benefit from stress incontinence. It may or may I am optimistic and hopeful about
this approach. I will also speak briefly not be really suitable for stress incon- medical therapy. This is the next great
about sacral nerve stimulation. tinence, but it does have a role in horizon in urology and voiding dys-
terms of trying to restore and re- function, both for those with neuro-
There is growing enthusiasm for the coordinate the circuitry between the pathic conditions and for the general
use of botox injection into the bladder brain and pelvic nerves. There is a public. They are not always a cure,
or sphincter in patients with neuro- reflex built into the pelvis; when you but in the context of the complete
pathic voiding dysfunction. This treat- activate those muscles, it tries to turn package there is a role for these medi-
ment may last 9-12 months and can be off bladder contraction and lessen the cations in either modulating or fixing
re-dosed for continued benefit. Ex- misbehavior. these issues.
perimental work is ongoing.
Timed voiding or delayed voiding Functional electrical stimulation is a
Finally, surgical techniques, such as can be helpful. This is a conscious behavioral or physical therapy
augmentation cystoplasty and urinary effort to stretch out the period of (Resplande J, et al. Neurourol Urodyn.
diversion, may be used. As a surgeon, time before spontaneous wetting epi- 2003; 22(1)24-8; Smith JJ 3rd. J Urol.
I don’t want to imply that surgery is sodes or the frequency sensation gets 1996 Jan; 155(1): 127-30). This ther-
where these conditions should end up the better of us. This process in- apy can be done in the doctor’s office
or that an operation is the answer for volves a tremendous amount of prac- and at home. There is no exact regi-
everything. There is, however, a defi- tice, thus the reference to the rein- men established, for instance as to the
nite role for surgery in specific situa- forcement mode. Part of the behav- duration of the therapy. The mecha-
tions, after thoughtful management ioral modification process involves nism of benefit is not clearly under-
and lots of discussion. When done having the patience to continue the stood. It can help to stimulate or trig-
well, these operations work and can exercise, while the forces within us ger some of that reflex function by
really make a difference in people’s try to heal those circuits to the extent allowing the circuits to awaken. There
lives. that they can. Hopefully, through are objective and subjective success
restorative therapies, such as stem rates of six to eighty percent for people
Behavioral modification does not cost cells, we will find ways to drive this with overactive bladder disorders. The
anything and it is fairly simple to do. process more quickly and more effi- neuropathic group would be consid-
It is simple but it is not easy and it is ciently. In the meantime, there is a ered a subset of these disorders. The
time intensive. The behavioral modifi- great deal of potential within us that follow up on these studies is generally
cation platform includes all of the can drive this healing to restore func- short and the durability of results is
components that are identified in this tion. somewhat variable and unproven. In
graphic. It involves a significant considering therapies, this is certainly
amount of education. Unfortunately, On the medical side, while the medi- worth the try; there is no downside and
the medical system today doesn’t pro- cines have a variable effect, they do it might help. This therapy is fairly
vide for a lot of time that is required to have their role in therapy. The mus- non-invasive and is a reasonable ex-
perform this education. I am always carinic receptor family (Chapple CR, pense.
impressed by how helpful it can be to Urology. 2000; 55:33-46) is the pri-
simply sit down with someone and tell mary target for treating bladder over- It is also possible that the success rates
them how the system is supposed to activity. The antimuscarinic agents may mirror the placebo effect. The
work, where it is not working, and used for the treatment of overactive placebo effect may actually play a
how to try and get back to a place bladder include Tolterodine (Detrol); very positive role in therapeutic ap-
it comes in a sustained release form proaches to treating neuropathic void-
The Transverse Myelitis Association Page 37
ing dysfunction. It is difficult to con- therapy that, in its greatest utility, This image is a sagittal view of that
trol for these effects because of the can push those two ends back toward sacral location. We access the nerves
influence and impact of cortical func- the middle. I have great enthusiasm at S3 and at S4. The image shows the
tion in this process. Therapeutic suc- for this therapy, because there are tip of the coccyx bone. This area is
cess cannot be measured in a purely relatively no risks and the potential the pelvis. The spinal cord ends here
objective fashion. The enthusiasm, benefits can be substantial; it may and the nerves of the cauda equina
motivation and commitment of both help and won’t hurt. When it works traverse down in a little sandwich of
the practitioner and patient play a criti- it can be a homerun, and when it bone. If one can get those leads close
cal role in arriving at positive out- doesn’t, about the worse thing that enough, the stimulation can be deliv-
comes from these therapies. So, while happens is that people are disap- ered.
we might attribute success to a placebo pointed.
effect, it is the case that the placebo This is a photograph of the device; it is
effect in this situation, if that is the The therapy I am describing is an identical to a cardiac pacemaker.
right term, is real and positive and off-label use. It is an implantable,
powerful. In putting together a treat- programmable, neurostimulation sys- This is what the device looks like
ment package, what we bring in our tem. The therapy requires two when it is implanted. It is placed up
conscious thoughts about this process stages. The first stage is a test stimu- near your back pocket or where your
is important and has a role to play. lation procedure; it is a temporary wallet would be, in a nice cushioned
test that can last seven to ten days or area so that you are not leaning on it.
Sacral nerve stimulation is a therapy longer. If this test proves successful, It basically has no restrictions. If you
used to treat urinary urge incontinence; a device similar to a pacemaker is have this device, about the only thing
significant symptoms of urgency- implanted that can deliver stimula- you can’t do is have an MRI or use
frequency. In some situations, it may tion to the pelvic nerves. diathermy; so there is not much in the
also be helpful in treating idiopathic way of exclusions.
urinary retention. Referring back to These are a few intra-operative pho-
the spectrum or continuum of neuro- tographs showing how we access
pathic voiding dysfunction, this is a these nerves. The patient lies on Permanent pulse generator
their stomach, prone. In the area of
PNE (peripheral nerve evaluation) the lower spine and pelvis is the sac-
ral foramina; an opening below
which is found the sacral or pelvic
nerves. These nerves drive pelvic
function; they go to the bowel, the
bladder, and sphincter area. It is pos-
sible to get a needle down in that
area and a lead that can then stimu-
late the nerve. It doesn’t pierce the
nerve; it just has to sit near enough
that it can trigger those responses.
Sacral nerve localization
Page 38 The Transverse Myelitis Association
Tined Lead with Introducer Current generation lead implant with incontinence, almost half had
elimination of the voiding episodes.

What this device does is calm the sys-

tem. We really don’t know the entire
mechanism, but it kind of balances
bladder behavior. I often tell my pa-
tients that it allows the normal signals
to get through and it dampens down
those spontaneous, reflexive ones that
create the over activity.
Tined Lead with Tines Deployed
The graphic (next page) shows the re-
sults of a quality of life measure for
people who have had the sacral nerve
stimulation therapy. The SF-36 score
is not disease specific, but a general
measure of one’s sense of well being.
In many domains, relative to the con-
trol group, the implant group had sig-
nificant improvement: vitality, social
This schematic shows the lead tun- functioning, mental health, wellness,
neled under the skin; it dwells nearby This graphic represents the results and sense of wellness. This device can
one of those nerves. The current gen- we’ve had from this therapy. The make a significant difference in peo-
eration of this lead can be put in with a data in this graphic is from patients ple’s lives when it works. If it doesn’t
technique that is about as simple as who did not have neuropathic void- work, then it is something that one can
putting in a central line. It used to in- ing dysfunction. The caveat for peo- check off the list and say, well, it was-
volve something that looked a lot like ple with neuropathic voiding dys- n’t the right thing for me.
a laminectomy and now it involves function from TM, MS or spinal in-
only a little centimeter stab incision. jury is that there is a greater variabil- The next therapy I want to talk about
ity of success. The approach I take is denervation with botox (Botulinum-
It is placed near to the nerve and the in my practice is that if I test fifty A toxin for treating detrusor hyperre-
stimulating locations. The lead is held people and two respond, it has made flexia in spinal cord injured patients: a
in place by some tying so it moves a huge difference in those two people new alternative to antichoinergic
with the person. It doesn’t need any and that is my goal. From this group drugs? Preliminary results. Schurch B,
anchorage; it self-anchors and there is as many as seventy-nine percent of Stohrer M, Kramer G, Schmid DM,
no migration. folks had at least a greater than fifty Gaul G, Hauri D. J Urol. 2000 Sep;
percent improvement. And for those 164 (3 Pt1): 692-7). Botox inhibits
The photographs are from the test acetylcholine release at the presynaptic
phase; after the procedure is com- cholinergic junction; it can paralyze
Sacral nerve stimulation: Results
pleted. I usually put two leads in be-
cause not all nerves respond in the
same way. If the therapy doesn’t
work, you open up these little incisions
and pull the leads out; there is no harm
done. If it does work, then you usually
take one of these out. You open up
this little incision a bit more to put that
pulse generator up in its location. So,
that is about as extensive and as in-
volved as is the entire procedure.
The Transverse Myelitis Association Page 39
Improvement in Urgency-Frequency 6 Month SF-6 Scores cystoplasty, there is a catheterizable
stoma that can be constructed from the
use of the appendix. It can be inserted
into the bladder, and one can create a
channel on the abdomen. This surgery
can facilitate catheterization, rather
than having to access one’s own ure-
thra. This can be especially helpful for
women or if one is in a wheelchair,
where it involves having to transfer,
get undressed, and find a private place.
With a catheterizable stoma, one
merely rolls down their waistband and
inserts the catheter. When these sur-
geries are done well, the outcomes can
create significant results from the per-
spective of convenience and quality of
life.
the system in a durable way. It is units to use and what sites in the The other side of the neuropathic void-
eventually absorbed. We have learned bladder. The effects of this therapy ing dysfunction spectrum involves re-
that injections of botox into the blad- can last three to nine months, and can tention. The mainstay therapy for re-
der muscle can calm unstable contrac- really calm the system. When look- tention and the safest overall therapy is
tions. The technique is evolving and ing for something short of irreversi- self-intermittent or clean catheteriza-
the protocol is in the process of being ble surgery, this may have a role in tion. Whether it is desirable or not is
worked out; for instance, how many regard to buying some time. an entirely different issue. Self-
intermittent catheterization is, without
Surgery: Augmentation cystoplasty This is a schematic of an augmenta- question, the safest and most durable
tion cystoplasty. A piece of the in- form of long- term management until
testine is taken out of continuity and we learn how to turn the bladder back
is formed into a patch and sutured on. Foley catheters, supra-pubic tube
onto the bladder to make it two or drainage have a role, but, if you can
three times its capacity. The result is avoid these therapies, they are cer-
that it lowers bladder pressures and it tainly worth avoiding. Sacral nerve
can eliminate leakage. There are stimulation has a limited role. Again, I
some potential downsides and it of- have no hesitation in testing people,
ten requires self-intermittent cathe- but the results haven’t been over-
terization. whelming. And then, as I noted, sur-
gery has a limited role. Ileovesi-
As an alternative to augmentation costomy, a so-called bladder chimney

Catheterizable stoma
Page 40 The Transverse Myelitis Association
and continent catheterizable stomas bacterial colonization, not infection. Fiber, fluid, laxatives, and supposito-
also may be considered, but in limited Often there is some overgrowth and ries may all help bowel evacuation.
situations. one might get some symptomatic But what happens when these don’t
infections in a given year, but it is work? I want to talk briefly about the
It is important for me to debunk some generally not any more of a problem ACE procedure. We would consider
of the myths about self-catheterization. than what is found in the general this for difficult cases. This is called
Self-catheterization was initiated in the population. A short course of antibi- an antegrade continence enema; it is
early seventies. Jack Lapides recom- otics is usually effective. It does not basically a way to give oneself an en-
mended this approach instead of drain- require a ten to fourteen day course ema without all the hassle or the need
age tubes. He was almost drummed of antibiotics. It is just a question of for assistance. It can be created with
out of the urology world for having beating down the numbers. You either the appendix or a special cathe-
made the suggestion, and now it is can’t eliminate those bacteria; you ter device. Up to 70% of patients with
considered the mainstay in therapy. It really just need to stabilize the situa- an ACE can establish fecal continence
grew out of the experience with spinal tion. It might not be desirable, but if on a reliable schedule. It is placed
cord injured Vietnam veterans. We we are trying to buy time, this is surgically (I do them laparoscopically)
began to realize that crede voiding, definitely the way to go. or it can be put in by a radiologist.
straining and dyssynergic situations The best thing about it is that it is re-
ultimately lead to renal failure, sepsis Finally, I would like to talk about versible. If it is not the full answer, it
and a very high death rate in this bowel dysfunction. Fecal inconti- can be undone with no harm.
group. With the advent of intermittent nence and constipation are often
catheterization, those problems essen- more problematic than voiding dys- This graphic depicts a temporary ACE;
tially disappeared. function. Remember, too, the more this is what it looks like if it is done by
empty the rectum, the better the blad- a radiologist. It does require a period
Self-intermittent catheterization is very der will behave. They are wired into of time for healing. It is located down
safe over the long term. It is safe to the same place, and distention of the in the right lower quadrant. The cathe-
use the same catheter until it disinte- colon, poor motility, and constipation ter device is a little coiled catheter,
grates. There are all sorts of miscon- really sends confusing messages to like a phone cord, with a little port at
ceptions about boiling and disinfecting the bladder and makes it difficult to the top that flips open. It doesn’t leak,
and sterilizing. It’s called “clean” in- sort out. It also has an anatomic ob- it doesn’t smell, it really doesn’t im-
termittent catheterization, not “sterile” structive function with big time con- pose any kind of impediment. It is self
intermittent catheterization, and there stipation. retaining and non-leaking, and it al-
is a reason for that. It requires no boil- lows one to put fluid in the start of the
ing, no sterilizing, no disinfection. Chait trapdoor catheter colon and wash the entire thing out.
There are more bacteria safely colo-
nized in the bladder of those who
catheterize than there are bacteria
coming out of the U.S. water systems
in most of our locations. It’s safe to
just rinse the catheter, pat it dry and
put it in a baggy. One does not in-
crease the risk of infection. So this
ought not to be a ritual that adds any
time to your day.

With self catheterization, “more is bet-

ter.” One might tend to think, “Well, I
don’t want to put that in too many
times because I might get an infec-
tion.” The reality is that the more you
do it, the more the bladder is kept
empty, and the safer is the system.
When it is done more often, the blad-
der pressure is low, and the bacterial
soup is washed away. A person has
The Transverse Myelitis Association Page 41
Chait/ACE set-up Interventional Approaches to brain where the messages are inter-
Neuropathic Pain preted as painful.
Paul J. Christo, MD, MBA
Assistant Professor Pain can be classified as both acute
Director, Pain Treatment Center and chronic. Subsumed under chronic
and Pain Fellowship Program pain are nociceptive pain, neuropathic
Johns Hopkins Medicine pain, visceral pain, and then a mixture
of all three types of pain. For instance,
some patients who suffer from low
Adapted from a presentation given at the
2006 Rare Neuroimmunologic back pain experience both nociceptive
Symposium and neuropathic pain; however, it can
be difficult to distinguish the mecha-
I am a pain medicine specialist, anes- nisms that are responsible for particu-
thesiologist, and the director of the lar types of pain.
pain treatment center and pain fel-
lowship program at Johns Hopkins. Acute pain (next page) can be viewed
My article focuses on interventions as an unpleasant reaction or sensation
that we typically use to treat neuro- due to some type of tissue damage that
pathic pain. As an introduction, I may be related to surgery or even an
will distinguish acute versus chronic injury, such as spraining an ankle.
pain and nociceptive versus neuro- Acute pain is physiologically normal
Most enemas get up about halfway and pathic pain and will describe the and serves a protective role. The de-
then fall down. An irrigation schedule mechanisms behind the various types gree of pain a patient experiences typi-
can be every one, two or every third of pain. I will then highlight the cally corresponds to the extent of tis-
day and evacuation occurs within interventional strategies or injections sue damage. Acute pain treatment
about 15-30 minutes. One can use tap that we use to help relieve neuro- outcomes are good; that is, most acute
water, saline or phospha-soda. It re- pathic pain. pain can be successfully treated with
quires no additional assistance. Folks medications and patients usually do
can sit on the commode and be clean Pain warns of threatened or ongoing not suffer from persistent pain. For
and worry free after 30 minutes and tissue damage. The International As- example, we often use oral or intrave-
until the next time. sociation for the Study of Pain de- nous opioids and/or epidural anesthe-
fines pain as, “an unpleasant sensory sia intra-operatively and post-
In conclusion, the effects of TM on and emotional experience associated operatively with good pain control and
pelvic function are highly variable. It with potential or actual tissue dam- minimal side effects.
is possible to diagnose voiding dys- age.” In general, tissue that is in-
function and plan appropriate therapy. jured from surgery, trauma, or even Chronic pain poses more of a chal-
Our goals in therapy are to preserve disease processes release inflamma- lenge in understanding the disease and
the safety of the kidneys and this is tory products such as prostaglandins treating the symptoms. The Interna-
ordinarily not hard to do. Continence, or histamine. These products trigger tional Association for the Study of
independence and maximizing quality pain signals that travel from the body Pain classifies or describes chronic
of life are the other goals of therapy. to the spinal cord and then to the pain as, “pain that persists after the
Our progress has been incremental, but
it is real. We need to be our own best Pain Classification
advocates, and that requires that you
become educated about your condition
and about possible therapy options.
One of the goals of the TM Center at
Johns Hopkins is to be that place of
information transfer. The road is long.
I believe that in our lifetime, many of
these conditions will be better under-
stood, and we will have medicines and
therapies to better restore function.
Page 42 The Transverse Myelitis Association
For example, patients describe this
type of pain as burning or electric-like
in sensation (3). There tends to be a
delay in onset after injury. Patients
also describe neuropathic pain as
shooting, stabbing, or shock-like, or
even a continuous aching sensation.
Upon examination, physicians fre-
quently detect a phenomenon called
allodynia, or pain from a stimulus (like
a cotton swab) that does not normally
evoke pain. Furthermore, clinicians
may also uncover another feature of
neuropathic pain called hyperalgesia,
or an exaggerated, quite painful re-
sponse to a stimulus (like a needle
prick) that normally provokes pain (4).

Origins of Neuropathic Pain

Peripheral nerve trauma
• Entrapment neuropathies
• Nerve transection
• Amputation or stump pain
expected healing time of injury.” Pa- tion of nociceptors (pain receptors). • Neuroma
tients who suffer from chronic pain Nociceptive pain is often considered Other Mononeuropathies
often describe symptoms that are out acute, though several chronic pain • Diabetic neuropathy
of proportion to anything that physi- states, such as arthritis and sickle cell • Malignant nerve/plexus invasion
cians would detect on physical exam. crises may be nociceptive in nature. • Connective tissue disease
We believe that chronic pain serves no Nociceptors are located throughout Central sensory deficits
clinical benefit. Instead, it often leads the body. They are widely distrib- • Infectious
to psychosocial struggles such as de- uted in the skin, subcutaneous tissue, • Chemical
pression, anxiety, fear, and other co- bone, muscle, connective tissue, vis- • Ischemic insults
morbidities. Pain experts generally cera (organs), and blood vessels. • Disease (Multiple Sclerosis, Cerebral
agree that chronic pain begins any- When patients experience nocicep- Palsy)
where from 3-6 months of persistent tive pain, they often describe it as Polyneuropathies
pain and results from a variety of aching, throbbing or sometimes • Diabetic
mechanistic changes to the nervous sharp. This pain is typically respon- • Alcoholic
system (1, 2). Treating chronic pain sive to opioids, such as morphine, • Nutritional
requires multimodal therapy: injec- fentanyl, or hydromorphone • Infectious (HIV)
tions, medications, physical therapy, (dilaudid). • Chemical (Chemotherapy)
and psychological interventions in or- • Idiopathic/Genetic
der to achieve the best outcome. In Neuropathic pain differs from no-
Root/dorsal root ganglion
our pain clinic, we treat non-malignant ciceptive pain. The International • Post herpetic neuralgia
(non-cancer), chronic pain patients, as Association for the Study of Pain • Trigeminal neuralgia
well as patients suffering from cancer- defines neuropathic pain as, “pain • Prolapsed disc/compression
related pain. We focus on providing an that is initiated or caused by a pri- • Arachnoiditis
array of therapies that will maximize mary lesion or dysfunction in the • Tumor compression
pain relief, increase mobility, allow peripheral or central nervous system • Root avulsion
patients to re-engage socially, and en- or both.” Neuropathic pain continues • Surgical (Rhizotomy)
joy an enhanced quality of life. without ongoing tissue damage and
despite tissue healing. There are sev- There are multiple origins of neuro-
Nociceptive pain may result from me- eral clinical characteristics that are pathic pain that range from peripheral
chanical, thermal or chemical excita- associated with neuropathic pain. nerve trauma, such as amputation or
The Transverse Myelitis Association Page 43
Prevalence of Pain in the US (5) neuropathic pain. Neuropathic pain is
difficult, but rarely impossible to treat.
Researchers struggle to link symptoms
that patients exhibit to specific mecha-
nisms in the nervous system that may
explain the symptoms. A single
mechanism may be responsible for
multiple symptoms in one patient, or
the same symptom (burning, for in-
stance) seen in different patients may
be due to different mechanisms. In
fact, multiple mechanisms may exist
simultaneously in a single patient and
may change over time (6). As we un-
ravel these mechanistic intricacies,
targeted medical or perhaps procedural
therapies may be developed to treat
nerve injury, to diabetic neuropathies neuropathic pain is 50% or greater in elements of the dysfunctional nervous
and infectious or chemical causes. patients with AIDS, cancer, and dia- system.
Chemotherapy-induced neuropathies betes, whereas it is only 28% in pa-
often resolve, though sometimes they tients with multiple sclerosis. Neuropathic pain is associated with
require specific pain-relieving medica- distinct cellular and molecular mecha-
tions, if the neuropathy persists chroni- Clinical Manifestations of nisms that incorporate ion channels,
cally. Spinal cord injury or nerve root Neuropathic Pain cytokines, and neuropeptides. Pain
injury may result from trauma, disease results from abnormal communication
Allodynia: pain due to stimulus that between the peripheral and central
processes (cancer or multiple sclerosis, does not normally produce pain
for instance), or sometimes following nervous system. Specifically, pain may
surgery. Post-herpetic neuralgia Analgesia: absence of pain in derive from aberrant relationships be-
(shingles pain that persists) represents esponse to stimulation that would tween large and small fibers, and sym-
another classic neuropathic pain state, normally be painful pathetic fibers in the nervous system.
as well as trigeminal neuralgia. Hyperalgesia: an increase in
Arachnoiditis can develop after multi- response to stimulus that is normally Mechanisms of Neuropathic Pain
ple spine surgeries, such as spinal fu- painful Brain
sion and may cause chronic low back
Hyperesthesia: increase sensitivity • Altered “gating”
and leg pain.
to stimulation • Molecular Changes
Hyperpathia: abnormally painful • Gene expression changes
The prevalence of low back pain is
reaction to a stimulus as well as an • Receptive field changes
very high in the United States and it is
significantly higher than cases of pain increase threshold Spinal cord
associated with other conditions. The Hypoalgesia: diminished pain in • Altered “gating”
cause of low back pain is tremen- response to a normally painful • Dorsal horn denervation
dously difficult to establish and it is stimulus • Hypersensitivity
equally difficult to determine whether • Gene expression changes
Hypoesthesia: decreased sensitivity
low back pain is caused by nociceptive • Receptive field changes
to stimulation
or neuropathic pain mechanisms. The
prevalence of neuropathic pain is high- Paresthesia: an abnormal sensation, Peripheral Nerve Fibers
est for diabetic neuropathy, then whether spontaneous or evoked • Ectopic discharges
postherpetic neuralgia (persistent shin- Dysesthesia: an unpleasant, abnor- • Mechano-sensitivity
gles pain), cancer-related pain, spinal mal sensation whether spontaneous • Ephaptic cross talk
cord injury, and complex regional pain or evoked
syndrome (also known as reflex sym- Sympathetic Fibers
pathetic dystrophy). The incidence or • Cross talk
This chart identifies and defines the • sprouting
number of newly diagnosed cases of various clinical manifestations of
Page 44 The Transverse Myelitis Association
The mechanisms range from sympa- or neuropathic pain states. eventually leads to new gene expres-
thetic nervous system dysfunction to sion. The expression of the c-fos gene
dysfunction of peripheral nerve fibers. This picture (bottom left) represents sensitizes the dorsal horn cell, and
Altered function can occur at the level the “sensitizing soup” just described. leads to a phenomenon called central
of the spinal cord (dorsal horn), the The left side of the image represents sensitization. We believe that the de-
dorsal root ganglia, or in the brain, tissue injury from surgery, trauma, or velopment of central sensitization re-
specifically the thalamus and somato- some destructive process, for exam- flects a chronic pain state and may
sensory cortex where higher level pain ple. There is a subsequent release of help explain the symptoms of neuro-
processing occurs. stimuli: histamines, prostaglandins, pathic pain.
ATP, and hydrogen ions. These
Neuroinflammation: stimuli sensitize the nociceptor (pain Interventional strategies for treating
“Sensitizing Soup” receptor) and trigger the transmission neuropathic pain often involve injec-
of impulses from the nerve to the tions of local anesthestic and some-
• Hydrogen ions spinal cord, and then to the brain times steroid. While many patients
• Histamine where the signals are interpreted as experience anxiety about injections,
• Noradrenaline painful. they are often surprised at the level of
• Bradykinin comfort that they receive from these
• Prostaglandins This graphic (bottom right) helps to treatments.
• Leukotrienes explain the transition from acute to
• K ions chronic pain. The left side represents This graphic (next page) depicts the
• 5-HT acute pain and the right depicts targets for some of these injections.
• Cytokines (interleukins,TNF) chronic pain. The structure repre- The targets include peripheral nerves,
• Purines sented at the top of the graphic is a such as the sciatic nerve for leg pain,
• Nerve growth factor nociceptor (A-delta or C-fiber) and or the medial branch nerve in the spine
• Neuropeptides the area at the lower portion of the to help reduce low back pain. Nerves
graphic represents a specific part of in the spine are targeted by epidural
This group of neurochemicals that is the spinal cord called the dorsal horn. steroid injections that are useful for
released by tissue trauma, diseases, or In acute pain, glutamate is released pain associated with disc herniations
other factors may be viewed as form- and binds to an AMPA receptor. In or spinal nerve compression by ar-
ing a pain “sensitizing soup” that leads chronic pain states, including neuro- thritic bone. The dorsal horn of the
to neuroinflammation. This chart pathic pain, glutamate is released in spinal cord might be targeted with in-
identifies an array of stimuli that we large quantity and bombards the trathecal agents (intrathecal pump),
believe are part of this soup that sensi- NMDA receptor that is located in the such as morphine or bupivacaine, or
tizes pain receptors, bombards the dorsal horn of the spinal cord. A se- with spinal cord stimulation that may
nervous system, and leads to chronic ries of chemical events occurs which help modulate back and leg pain re-
Pain Mediators (Nature
2001; 413:203-210)

Transition to Chronic Pain

(Brookoff D. Chronic Pain:
1. A New Disease? Hospital
Practice, 2000).
The Transverse Myelitis Association Page 45
Injection Targets jected with lidocaine (3cc of 3% lido-
caine) intrathecally, those who re-
ceived lidocaine plus steroid (3cc of
3% lidocaine with methylpredniso-
lone), and those that received no injec-
tion (control group). Ninety percent of
the patients in the lidocaine plus ster-
oid (injected into the cerebrospinal
fluid) group reported relief. They re-
ported good to excellent relief and a
decrease in their use of anti-
inflammatory (NSAID) drugs. These
patients described the same degree of
relief even two years later and with no
side effects. Despite the favorable
outcome of this treatment, many pain
physicians do not use intrathecal ther-
apy (intrathecal local anesthetic and
steroid) to help treat this condition,
sulting from previous spine surgery, or that is burning or electric-like. The because of reports of chemical menin-
neuropathic pain stemming from per- pain courses along a certain derma- gitis, chronic arachnoiditis, and trans-
sistent shingles pain or complex re- tomal distribution and typically lasts verse myelitis that may result from
gional pain syndrome (RSD). greater than one month after the rash repetitive injections of steroid
heals. Often the chest and face are (methylprednisolone) intrathecally.
Neuropathic Pain Syndromes affected. It is more common in
women, and unfortunately, there is Some studies that examine treatments
• Post-herpetic Neuralgia (PHN) an increased risk of developing post-
• Complex Regional Pain Syndrome of PHN suffer from methodological
herpetic neuralgia as we age. The problems or low numbers of study pa-
(CRPS)
risk of having continued pain at 12 tients. Nevertheless, I believe that they
• Peripheral (Small Fiber) Neuropa-
months is almost five times higher in serve as a springboard for future stud-
thies: Diabetic
• Ischemic Limb Pain
patients who are 80 years of age ies of higher quality. Most of these
• Angina Pectoris
compared to those less than 80 year studies at least illustrate some positive
• Cancer Related (Chemo/RTX) of age. In fact, almost 50% of pa- effects on patients who suffer from
• Trigeminal Neuralgia tients greater than 70 years of age chronic pain conditions and therefore,
• Phantom Limb Pain describe pain lasting greater than one help guide our therapy.
• Post Stoke Pain year after the onset of the PHN rash
• HIV Neuropathy (7). Kikuchi et al (1999) studied the effi-
• Spinal Cord Injury cacy of epidural steroids compared to
• Neuroradiculopathy What is the evidence for the efficacy intrathecal steroids in patients who had
of injection therapy in the treatment post herpetic neuralgia for greater than
There are multiple neuropathic pain of PHN? There are four blocks that one year. The study involved just 25
syndromes. I will focus on two of we typically use: intrathecal steroid patients. It was a randomized, con-
these syndromes for which we have injections, epidural steroid injections, trolled, single-blind study for four,
some evidence of efficacy for inter- sympathetic blocks, and spinal cord weekly epidural or intrathecal injec-
ventions: post-herpetic neuralgia and stimulation. tions. He evaluated continuous pain,
complex regional pain syndrome. lancinating (shooting) pain, and allo-
Intrathecal steroids were studied by dynia before treatment, at the end of
Postherpetic neuralgia (PHN) is persis- Kotani et al in 2000. He studied 277 treatment, a week later, and 24 weeks
tent, chronic shingles pain and it is patients that had intractable post her- later. He found that there was signifi-
caused by the herpes zoster virus. petic neuralgia for three years. The cant pain relief in the patients who
Typically, patients experience a rash study was of good quality and con- received the intrathecal steroids, simi-
followed by vesicle formation, then sisted of a randomized, double blind, lar to Kotani’s study. There was mini-
scab development, and finally contin- controlled trial. The groups in the mal relief in those who received epidu-
ued pain. Patients often describe pain trial included those who were in- ral steroids, however.
Page 46 The Transverse Myelitis Association
Lumbar Epidural Steroid Injection zoster (shingles)? Wu et al (2000) and
Opstelten et al (2004) conducted re-
views of the literature and found that
sympathetic blocks are widely used for
the prevention and treatment of post-
herpetic neuralgia and for the treat-
ment of acute herpes zoster. However,
the studies relating to these treatments
were of low quality (lack or random-
ized, controlled trials). Case reports
suggest that sympathetic nerve blocks
may provide considerable relief in
acute herpes zoster, but may only offer
short-lived relief in PHN. However,
sympathetic blocks may be a worth-
while strategy to pursue, if pain is in-
adequately controlled by medications.
Since the severity of pain during an
acute herpes zoster attack is a risk fac-
tor for progression to PHN, sympa-
thetic blockade may lower the inci-
dence of PHN by reducing pain sever-
The evidence more strongly demon- neuralgia at the thoracic (chest) level, ity.
strates that patients with acute herpes we may offer intercostal blocks
zoster (shingles) typically do benefit (nerve blocks under the ribs) or tho- The graphic demonstrates how this
from either intrathecal or epidural ster- racic epidural steroid injections. Pa- injection is performed. The stellate
oids that help reduce pain in that acute tients with postherpetic neuralgia in ganglion is one of several structures
phase. The steroids may reduce neu- the face may benefit from a stellate that compose the sympathetic nervous
ronal inflammation that is associated ganglion block which blocks certain system. This local anesthetic block
with the acute phase of herpes zoster nerves that supply the face, scalp, interrupts sympathetic outflow to the
and may exert a membrane stabilizing ear, and neck. face, head, upper arm, ear, and neck.
effect on painful nerve transmission. By blocking sympathetic nervous sys-
Is there evidence that sympathetic tem transmission, pain signals that
These are images showing an epidural blockade with local anesthetics is travel with these nerves can also be
steroid injection. The patient lies on helpful in patients who have post- blocked. Patients who suffer from neu-
his/her belly. The procedure can be herpetic neuralgia or acute herpes ropathic pain in the previously men-
done with fluoroscopy (x-ray) or just
at the bedside. The image on the left Sympathetic Block: Stellate Ganglion Block
is the spinal cord with exiting nerves.
Under fluoroscopy, the patient lies
face down and a small needle is in-
serted into the epidural space usually
around lumbar level 4-5 or 5-1. Local
anesthetic is used to numb the area of
needle insertion. Contrast is injected to
outline the epidural space, and then a
small amount of local anesthetic along
with steroid is injected into the epidu-
ral space. Complications are rare if
performed by an experienced pain
physician.

If patients suffer from post-herpetic

The Transverse Myelitis Association Page 47
Sympathetic Block: Lumbar Sympathetic Block The ganglion impar represents the ter-
minal end of the sympathetic chain
(sympathetic nervous system). It is
located near the sacral and coccygeal
region of the spine as noted in this im-
age. This structure can be blocked for
patients suffering from neuropathic
pain in the rectal, anal, perineal, and
parts of the vaginal and urethral areas.
A 3½ inch, 22 or 25 gauge needle is
inserted through the anococcygeal
ligament or the sacrococcygeal junc-
tion and gradually reaches the retroce-
cal space. The x-ray image on the
right depicts a needle positioned
tioned regions may benefit from this aspect of the vertebral body. The through the sacrococcygeal junction
procedure. It can be performed at the image on the left shows injection of and contrast spread in the retrocecal
bedside or under x-ray guidance. contrast to verify proper needle loca- space. We want to avoid needle inser-
When performed at the bedside, the tion before local anesthetics are then tion into the colon or rectum. About
patient lies on his/her back and the injected. 6-7 cc of local anesthetic and steroid
physician palpates the cricoid carti- are then injected to block the ganglion
lage, and then moves laterally and Skin temperature is measured while impar.
away from the trachea and large ves- performing these sympathetic blocks.
sels of the neck. A small, thin needle We expect an increase in temperature Neuromodulation (electrical stimula-
is inserted to the transverse process of as a result of interrupting sympa- tors and drug pumps) can be useful for
C6 followed by injection of local anes- thetic outflow to the skin. In other alleviating neuropathic pain. A spinal
thetic. The procedure is similarly per- words, blood vessels dilate and re- cord stimulator delivers small doses of
formed under x- ray guidance, though lease heat when parts of the sympa- electricity to a certain area of the spi-
the needle may be positioned at C6 or thetic nervous system are blocked nal cord in an attempt to block the
C7 and contrast is injected to further with local anesthetics. In order to transmission of painful sensations.
verify that the needle is not located in confirm that the block is performed Drug pumps serve a similar purpose,
a blood vessel, and to confirm proper properly, we measure skin tempera- though specific medications are used
spread of the solution. ture. The image on the right demon- instead of electricity.
strates that one foot is warmer than
The x-ray image on the right demon- the other after performing a sympa- The image on the next page shows a
strates a needle positioned on the thetic block. drug pump (intrathecal pump). Such a
transverse processes of C6, contrast pump may contain morphine, hydro-
(dark material) spread moving down morphone, or bupivacaine. It is im-
toward the upper chest, and then sub- planted underneath the skin and a tube
sequent injection of local anesthetic is tunneled to the fluid-containing
solution to block the stellate ganglion. space surrounding the spinal cord,
The next graphic shows an x-ray im- Sympathetic Block: Ganglion Impar Block
age of a lumbar sympathetic block.
This injection is performed for patients
who have neuropathic pain in the
lower extremity. It is typically per-
formed under x-ray guidance at the
level of the low back. The needles in
the image on the left are placed at L2
and L3. Patients are positioned face
down during the procedure after which
we insert a thin and long needle (7
inches) to contact the anterior-lateral
Page 48 The Transverse Myelitis Association
Implantable Devices may offer an alternative approach to gies used to treat CRPS: sympathetic
pain control in patients who have blocks, spinal cord stimulation, and
Intrathecal unrelenting and intolerable pain from drug (intrathecal) pumps. Sympathetic
Pump PHN. blocks are frequently used to help treat
this disease process. The quality of
Reflex Sympathetic Dystrophy literature on lumbar sympathetic and
(RSD) is a type of neuropathic pain. stellate ganglion blocks in CRPS is
The condition has been re-named limited, however. Yet, sympathetic
Complex Regional Pain Syndrome blocks such as stellate ganglion blocks
(CRPS). It predominates in women for arm pain and lumbar sympathetic
(60-81%) and often appears in early blocks for leg pain can offer meaning-
adulthood (36-42 years). The syn- ful relief and can facilitate compliance
drome is typically caused by some with physical and occupational ther-
type of injury such as a fracture, apy. Many patients with CRPS may
strain or a sprain. Some patients pre- otherwise never move their leg or arm
sent with this syndrome following due to severe pain. Therefore, the re-
surgery or even spontaneously. The duction in pain associated with sympa-
pain is reported as intense, with ach- thetic blocks often permits individuals
ing, burning, or shooting qualities. to participate in physical therapy and
CRPS often occurs in the extremi- reduce their level of disability.
ties: legs or arms. Clinical manifesta-
tions include alloydnia and hyperal- Spinal cord stimulation may also be
gesia, swelling, color and tempera- considered for the treatment of CRPS.
ture changes, sweating changes, de- I have had a reasonable degree of suc-
creased range of motion, weakness, cess in using spinal cord stimulation
tremor, and nail and hair changes (8). for treating pain in patients who suffer
called the intrathecal space. Medica- from uncontrolled CRPS. It is typi-
tions are therefore delivered from the There are three interventional strate- cally considered in patients who are
pump directly to the spinal cord. The failing all other treatments such as
Spinal Cord Stimulation
image on the right illustrates a spinal nerve blocks, physiotherapy, or medi-
cord stimulator. This device contains a cations.
receiver and electrodes. The receiver is
implanted underneath the skin and the Overall, the literature provides moder-
electrodes are placed in the epidural ate evidence that spinal cord stimula-
space and directly on top of the spinal tion effectively reduces pain in CRPS
cord. Patients feel a buzzing or com- patients and promotes some benefit in
fortable humming sensation when the function. For instance, Kemler et al
stimulator is activated. (2000) in a high quality study exam-
ined the use of spinal cord stimulation
The studies on the use of spinal cord in patients who had CRPS (9). Some
stimulation (SCS) for the treatment of patients received spinal cord stimula-
post-herpetic neuralgia have provided tion plus physical therapy and the
mixed results. For instance, Meglio et other group just engaged in physical
al (1989) and Harke et at (2002) both therapy. He found that at the 6 month
reported that patients with PHN de- and one year follow up, pain was sig-
rived relief from stimulation; however, nificantly reduced in the spinal cord
Kumar et al (1996) noted that just two stimulator group; however, he later
of eight patients had pain relief at 7 found that patients in the spinal cord
years of continuous treatment with stimulator group reported less pain
spinal cord stimulation. In sum, studies relief at both the 3 year and 5 year fol-
do demonstrate satisfactory relief over low up.
a 2-4 year period, though the level of
evidence is less strong. However, SCS In a more recent study, Harke et al
(2005) found significant improvement
The Transverse Myelitis Association Page 49
in quality of life and functional status pain. Behavioral therapies can aid in Fatigue and Transverse
at a 3 year follow up among CRPS reducing the impact of pain on a per- Myelitis
patients who were using spinal cord son’s life and should be considered Randall T. Schapiro, MD
stimulation as a treatment modality with any treatment strategy. Director, The Schapiro Center for
(10). Specifically, patients reported Multiple Sclerosis at the
decreased pain and disability, im- References: Minneapolis Clinic of Neurology
proved functional status, and a reduc- and Clinical Professor of
tion in medication use. 1. Portenoy RK, Kanner RM. Pain Neurology, University of
Management: Theory and Practice. Minnesota
The effects of spinal cord stimulation FA Davis Company, 1996
may change over time. That is, some Adapted from a presentation given at the
studies have reported that the benefi- 2. Rowbotham MC. Neurology, 2004 Rare Neuroimmunologic Disorders
cial effects of stimulation lessen in 1995; 45 (suppl 9): S5-S10. Symposium
time for patients with CRPS, and PHN
(11, 12). In general, I would say that 3. Galer BS. Neuropathic pain of This article is about fatigue in trans-
many patients with neuropathic pain peripheral origin: advances in phar- verse myelitis. I have never really
who use spinal cord stimulation as a macologic treatment. Neurology considered transverse myelitis a dis-
treatment report that the therapy has 1995, Dec: 45 (12 Suppl 9): S17-2. ease. I have considered TM a symp-
improved their quality of life and less- tom of some other condition; in much
ened their disability for the period of 4. Backonja MM, Galer BS. Pain the same way as seizures end up being
time the device was used. assessment and evaluation of patients called epilepsy, if you are uncertain of
who have neuropathic pain. Neurol the cause. There are numerous causes
Intrathecal pain pumps with an opioid Clin. 1998 Nov; 16 (4): 775-90 of transverse myelitis. These include:
(morphine, for instance) may be help-
ful in controlling intractable pain asso- 5. Bennett GL. Hospital Practice, • Parainfectious - viral and bacterial
ciated with CRPS, though the litera- Oct 15, 1998 • Postvaccinal
ture fails to support this treatment with • Autoimmune: Lupus, Sjogren’s,
high quality studies. However, van 6. Woolf CJ, Mannion RJ: Lancet Sarcoid, Multiple Sclerosis
Hilten et al (2000) showed that pa- vol 353, 1999 • Paraneoplastic syndrome
tients with contractions (arm or leg in • Vascular
fixed or rigid position) associated with 7. Christo PJ, Hobelmann G et al.
CRPS demonstrated complete or par- Post-Herpetic Neuralgia in Older Fatigue can be associated with any and
tial relief of these symptoms after an Adults. Evidence-Based Approaches all of the diseases associated with
agent called baclofen was infused to Clinical Management. Drugs Ag- Transverse Myelitis. Not every case
through a catheter and an implanted ing 2007; 24 (1): 1-19 of transverse myelitis, however, has
pump (13). Some patients reported fatigue associated with it. I don’t
reduced pain and fewer sensory distur- 8. Christo PJ, Raja SN: Complex know which causes are associated with
bances as well. regional pain syndrome. In: Wallace fatigue and which are not; I am not
M, Staats PS, eds. Pain Medicine sure that anyone has that answer.
In general, pain specialists consider and Management: Just the Facts. Multiple Sclerosis is the prototype for
implantable pain pumps only in select New York, NY: McGraw-Hill, 2004. fatigue in this disease group, so I am
patients and in those individuals who going to focus on the relationship be-
9. Kemler et al. NEJM 2000; 343:
fail all other therapies. tween MS and fatigue. I recognize
618-624
that this case may not fit each and
Neuropathic and chronic pain can be 10. Harke et al, European Journal of every person with their individual
best treated with multimodal therapy. Pain, 9 (2005) form of transverse myelopathy or mye-
Pharmacological treatments are help- 11. Alo et al, Neuromodulation litis.
ful, and certain interventional/ 2002;5:79-88
procedural approaches can offer sig- Fatigue is the single most common
nificant relief. Complementary medi- 12. Kumar et al, Surg Neurol symptom that we see in multiple scle-
cine, such as acupuncture and pain 1996;46:363-9. rosis. It is the most disabling symp-
psychology can also be helpful. De- 13. van Hilten et al. NEJM 2000 tom that we see in multiple sclerosis.
pression and anxiety often co-exist If you have a transverse myelopathy
with chronic pain and neuropathic
Page 50 The Transverse Myelitis Association
and not multiple sclerosis, and have This fatigue can be just part of a comes fatigue. We have to understand
fatigue, there is not a doubt in my natural pattern that occurs in all peo- this connection and then get the appro-
mind that it is going to be very dis- ple. We are thrilled when we see priate treatment for depression, as
abling and a significant problem. It is normal fatigue in one of our patients, well.
seen in seventy-eight percent of the because we are happy that they are
people with multiple sclerosis. Nearly able to go to work and work hard. The most common type of fatigue we
two-thirds of patients experience fa- see in MS is in a different category
tigue on a daily basis and it causes We also see in transverse myelitis from what I have just described; it is a
temporary disability in up to 75% of and multiple sclerosis a neuromuscu- fatigue that we call lassitude. It is an
patients. Fatigue interferes with physi- lar, short-circuiting type of fatigue. overwhelming tiredness that hits peo-
cal functioning and with daily living. It is fairly easy to understand. The ple for no particular reason. When we
It has an impact on overall mental nerve is repeatedly firing until it talk about this type of fatigue, there
health by reducing vigilance and cog- blocks, because it is not healthy. In may be some deviation for some peo-
nitive function. It can disrupt normal the case of MS, there is the demyeli- ple with transverse myelitis depending
sleep patterns. Fatigue is also inti- nation process, the axonal process, on the specific cause. This fatigue
mately related to one’s sense of con- and the nerve process. But it can be must be a related to a neuro-chemical
trol over their illness. Patients can feel from other causes, as well. You start process. A person can be feeling very
that they have lost control over their out walking and you do pretty well. well, not depressed, can be in shape
disease and over their lives because of Then you begin to get the neuromus- and then just get so sleepy that they
fatigue. Fatigue frequently leads to cular fatigue. It just doesn’t work just have to take a break and take a
unemployment, and consequently, So- any more. Neuromuscular fatigue is nap. After the nap, they feel better,
cial Security has finally come to the treated with rest and graded exercise and then a while later, they are back
conclusion that people who have MS in order to build up capacity. into the same cycle. Lassitude, or
or MS-like diseases can be disabled on overwhelming tiredness, is difficult to
the basis of their fatigue. Fatigue is a Deconditioning is a third type of fa- understand.
criterion for disability. tigue. People who have neurologic
disease often do not get enough exer- This graphic depicts the various causes
Part of our problem in finding the cise and they become deconditioned. of fatigue in multiple sclerosis; this
causes and treatments for fatigue is They may wonder why they poop out would aptly apply to transverse mye-
that there are so many different kinds when they try to do something; it is litis, as well. Moving clockwise
of fatigue. Whether you have trans- because they are just not in shape. around the graphic, physical health
verse myelitis or multiple sclerosis, problems cause fatigue. Fatigue is
you will have normal fatigue. Every- A fourth type of fatigue is from de- caused from not being able to sleep,
body who works hard gets tired. pression. If you are not sleeping perhaps because of legs jerking or
Sometimes when we work hard and well; if you are not eating well; if bladder problems. Everyone has nor-
get tired and have a disease, we tend to you are not feeling well; you may, in mal fatigue; and people with MS and
attribute the fatigue to the disease. fact, be depressed. With depression TM also have to deal with this fatigue.
Everyone also has to deal with psycho-
Potential Causes of Fatigue logical fatigue, and people with
chronic disease have to deal with it in
spades. The environment also is a
cause of fatigue; from physical, social,
institutional and cultural barriers.

It is no wonder that fatigue is so com-

mon in these neurologic diseases. It is
common because we have the primary
causes, the actual disease itself. It is
common because we have the secon-
dary causes; the drugs that are taken,
the deconditioning, the psychologic
process. All of these factors lead to
fatigue.
The Transverse Myelitis Association Page 51
Fatigue in Patients with Multiple Sclerosis: Etiology how long to exercise (duration). Obvi-
ously, these are defined by individual
circumstances. If you apply the princi-
ples of training that we have learned in
the past two decades to neurologic dis-
ease, you can use exercise to build en-
durance and to decrease fatigue. But,
if you just jump in and do it, it is des-
tined for failure.
Primary Causes Secondary Causes I would like to turn now to the patho-
• CNS demyelination • Deconditioning physiology of this very complex and
• Changes in neurotransmitter levels • Psychologic causes poorly understood symptom. Fatigue
• Disruption of the neuroendocrine • Increased energy demands due to
is present at all stages of MS and I sus-
axis neurological disability
pect it is present in all stages of many
neurologic diseases that involve the
Fatigue is the single most common and tigued. So, what good is exercise, if
central nervous system. It doesn’t cor-
the most disabling symptom in MS. it only gets one fatigued? This was
relate very well with disability level,
Ninety-seven percent of patients report the prevailing thought for years; and
with gender, or age. Fatigue doesn’t
that they have fatigue. It is described then we began to learn something
correlate with the kind of MS one has
by up to half as their most disabling about exercise. When I was in high
(disease subtype) or how long they
and worst symptom. It is reported school, a long distance run was a one
have had MS (disease duration). Fi-
more than any other neurologic symp- mile run. Roger Bannister was the
nally, it doesn’t correlate with MRI
tom in people with multiple sclerosis; first person to break the four minute
findings. It is an amazing and difficult
more than balance problems, weak- mile. He went on to have a brilliant
symptom. Fatigue does have some
ness, bowel and bladder problems or career as a neurologist. He devel-
relationship to depression and some
paralysis. oped an interest in neuromuscular
relation to cognition.
disease. Today, a marathon is a long
When we treat fatigue, it takes a team distance run. I couldn’t run a mile
Fatigue is biologically complex. Some
approach to do it properly, and this is when I was sixteen years old, and
neurologists believe that it all has to do
particularly the case when it is the se- now I can run ten miles without
with the central nervous system hor-
vere kind of fatigue. It takes an occu- blinking. How does that happen?
mones that we call cytokines. We
pational therapist to understand the Well, we have to learn how to train;
really don’t know. There must be a
activities of daily living; how do you we have to apply the exercise appro-
neuro-chemical relationship. We don’t
dress, eat, bathroom more efficiently, priately.
know this from any basic science stud-
more effectively, more appropriately?
ies, but it makes sense. When we give
It takes a physical therapist to try to In MS it was very hard to do until a
people certain neuro-chemicals, it
work out the neuro-muscular fatigue, skier came along; his name was
seems to have an effect on that kind of
decrease the spasticity, and improve Jimmie Heuga. Jimmie motivated
fatigue. It obviously emanates from
the patient’s efficiency at functioning our learning about exercise and MS.
multiple levels within the neural hier-
physically. It takes the psychologist or How do we exercise in MS? We
archy. If we look at the metabolism
social worker to work on the psycho- started to understand that you have to
and nerve conduction in the central
logical aspect of the disease and the keep a balance between growth and
nervous system, we see that it has
depression. Finally, there is pharma- overdoing it when it comes to exer-
some correlation with fatigue and in-
cological therapy; we have drugs that cise. Training became important.
creased energy demands secondary to
we probably need to use in some peo- We began to understand the role of
neurological disability.
ple with these kinds of fatigue. aerobic exercise in keeping oneself
fit and less fatigued. And we began
If we look at these PET scans, it is evi-
How does exercise fit into the equation to use an exercise prescription. You
dent that the people who do not have
regarding the causes and treatments of have to know your goals; and your
fatigue have a different type of scan
fatigue? I am often told by many peo- goals will determine the type of exer-
from those people who do have fa-
ple with transverse myelitis and multi- cise you do. Then you have to know
tigue. This gives us some indication
ple sclerosis that when they exercise, how hard to exercise (intensity); how
that there is a neuro-chemical process
they get tired and then they get fa- often to exercise (frequency); and
going on with lassitude; this over-
Page 52 The Transverse Myelitis Association
Fatigue in Patients with Multiple Sclerosis: Hypometabolism that require physical effort.
I have limited my physical activities.
I have needed to rest more often or for
longer periods.
No Fatigue
Cognitive Function Subscale

I have been less alert.

I have had difficulty paying attention for
long periods of time.
I have been unable to think clearly.
I have been forgetful.
With Fatigue I have had difficulty making decisions.
I have been less motivated to do anything
that requires thinking.
I have had trouble finishing tasks that re-
quire thinking.
I have had difficulty organizing my
thoughts.
whelming tiredness. It is likely related My motivation is lower when I am fa-
My thinking has been slowed down.
to the pathologic alterations in MS; tigued.
I have had trouble concentrating.
inflammation, demyelination, and ax- Exercise brings on fatigue.
onal injury. There is a relationship I am easily fatigued.
Fatigue interferes with my physical func- Psycho-social Function Subscale
with depression and cognition, sug-
tioning.
gesting that common neural pathways Fatigue causes frequent problems for me. I have been less motivated to participate in
and brain regions may be affected. My fatigue prevents sustained physical social activities.
There is a probable association with functioning. I have been limited in my ability to do
reduced metabolism in the basal gan- Fatigue interferes with carrying out cer- things away from home.
glia and frontal cortex. Fatigue is ag- tain duties and responsibilities.
gravated by heat and it worsens at the Fatigue is among my three most dis- Another measure is called the Visual
end of the day. abling symptoms. Analog Scale. The patient can identify
Fatigue interferes with my work, family the extent to which they assess that
One of the issues we have to deal with or social life. fatigue has impacted their everyday
is how do we measure fatigue? How function.
does Social Security tell whether you The Modified Fatigue Impact Scale
are tired or not? So, we have fatigue (MFIS) addresses physical, cognitive Fatigue and sleep and wakefulness all
severity scales. These scales are rough and psycho-social functions. The seem to come together. So, we look at
measures, because they are paper and different subscales allow us to look the brain for our answers. We recog-
pencil scales. They offer limited in- at fatigue in a broader way. nize that there are different areas in the
sights into fatigue. brain that have different roles in keep-
Physical Function Subscale; the pa- ing us awake. As you move to the
The following are some examples of tient rates each item from 0 (never) front of the brain and to the left, there
these scales so that you can get an idea to 4 (almost always). The MFIS is more normal wakefulness. As you
of how we measure fatigue. score is the total of all ratings from 0 move more deep into the brain, there is
to 84. The higher the score, the a different type of neuro-chemical as-
The fatigue severity scale is a series of worse is the fatigue. pect to our fatigue. So, we have dif-
questions that you answer. The patient ferent kinds of activity going on with
I have been clumsy and uncoordinated. different neuro-chemicals in the brain.
rates each item from 1 (strongly dis-
I have had to pace myself in my physical
agree) to 7 (strongly agree). The FSS activities.
score is a mean rating across all nine I have been less motivated to do any- We have pharmacologic management
questions; the higher the score, the thing that requires physical effort. that we use to try to treat the fatigue
worse the fatigue. I have trouble maintaining physical ef- that occurs in MS. Most patients who
fort for long periods. have severe types of fatigue whether
My muscles have felt weak. from chronic fatigue syndrome or MS
I have been physically uncomfortable. or transverse myelitis, will require a
I have been less able to complete tasks medical and a non-medical approach
The Transverse Myelitis Association Page 53
Two Types of Wakefulness dren. We have used Cylert for about
the past twenty years carefully, be-
cause it has some abuse potential. It
may be useful for patients that do not
respond to Amantadine or modfinil
(Provigil). A “Black box warning” on
Pemoline in 1999 regarding the risk of
hepatic failure has lead to a reduction
in its use. The FDA decided to survey
people about liver disease and liver
failure and found a few cases of liver
failure. They decided that this drug
was unsafe. Neurologists have used
Pemoline for twenty some years and
we never saw a case of liver failure.
As a matter of fact, we never checked
liver function. We begin Pemoline at
to fatigue treatment. Rehabilitative tigue; we have been using Aman- 18.75 mg per day, and then titrate to a
medicine will have a role as a treat- tadine now for almost twenty years. maximum of 75 mg per day. Due to
ment approach for fatigue. It is clearly a neuro-chemical; a its association with life-threatening
dopaminergic and a cholinergic hepatic failure, patient consent should
Many years ago there was a doctor in medicine. Generally, it is well toler- be obtained prior to initiating therapy
Halifax, Nova Scotia who had MS. He ated. Occasionally, it causes some and liver functions should be moni-
was a family doctor. He used a drug side effects, such as nausea, dizzi- tored. Patient discontinuation due to
for the flu called Amantadine. It is an ness and insomnia. One of the side side effects is common. The most
oral pill that you take to prevent the effects is called livedo reticularis, commonly reported side effects in-
flu. He was afraid he was going to get which may occur in 1-5% of patients clude anorexia, irritability, insomnia
the flu, so he took Amantadine and his following extended use. It is a pat- and weight loss. It should be discon-
fatigue went away. He thought that tern of veins in your legs that look tinued if ALT (SGPT) is increased to a
was strange, so he decided to do a like spider webs. If you didn’t know clinically significant level or signs of
study. He went off of the Amantadine it is caused by Amantadine, you liver failure develop.
and the fatigue came back. He went might think it was a circulatory prob-
on the amantadine and the fatigue lem. Amantadine may precipitate or Modafinil (Provigil) is considered to
went away. So, he went to Dalhousie exacerbate psychotic symptoms. be a first line agent for the treatment of
University in Halifax, Nova Scotia and Patients may become refractory to fatigue. The FDA approved it in 1999
he set up a study with Dr. Jock Amantadine with long-term treat- as a “wake promoting” agent for the
Murray, a randomized, double blind, ment. Basically, it is an easy medi- treatment of excessive daytime sleepi-
placebo controlled clinical trial on cine to take. We give it at one hun- ness in patients with narcolepsy. Mo-
Amantadine. Lo and behold it dred milligrams, twice a day. You dafinil has been found to provide ef-
worked; a third of the patients got bet- should avoid taking an evening dose fective treatment for MS-related fa-
ter with this medicine compared to the close to bedtime. Overall, it appears tigue in multiple trials. In a crossover
placebo. The efficacy of Amantadine to have a moderate effect on fatigue. study by Rammohan, et al, MS pa-
has been shown in four trials. About a tients treated with 200 mg/day modaf-
third of patients with mild to moderate Another pharmacologic treatment is inil for two weeks showed a signifi-
fatigue report significant short-term Pemoline or Cylert. Pemoline should cant improvement in fatigue versus
improvement. not be used as an initial treatment. It placebo. It was recommended by the
is FDA approved for the treatment of “working group for Pharmacologic
Amantadine is considered to be a first- ADHD. Pemoline has been used for therapy in MS-related fatigue” as a
line treatment for mild MS-related fa- the treatment of MS-related fatigue. first-line therapy for moderate-to-
tigue. It is FDA approved as an anti- This is a stimulant; the intent of this severe cases. Data suggests that cyto-
viral and anti-Parkinson agent. Aman- drug is that we can stimulate the kine-induced fatigue following inter-
tadine has a long history of being used brain. Cylert is a drug that stimulates feron injection may be mitigated by
for the treatment of MS-related fa- adults and it calms hyperactive chil- the use of Modafinil (Provigil). It pro-
motes wakefulness without general-
Page 54 The Transverse Myelitis Association
ized stimulation. Spasticity Management procedure that decreases the sensory
Frank S. Pidcock MD stimulation to the nervous system; and
We initiate the therapy with 100 mg Kennedy Krieger Institute intrathecal Baclofen pump placement.
daily. We may increase the dosage to This last intervention is a surgical pro-
200 mg daily. We administer the cedure in which a programmable pump
medication in the morning. If a sec- is placed into the back and then a
ond daily dose is required, it is admin- Adapted from a presentation given at the flexible catheter slowly infuses the
istered before 1:00 PM to prevent ad- 2006 Rare Neuroimmunologic medication, Baclofen, directly into the
versely impacting nocturnal sleep. Symposium cerebral spinal fluid.
Interference with BCPs may necessi-
tate use of alternative forms of birth The treatment of tight muscle by Spasticity is treated because it causes
control. It is generally well tolerated. stretching has been practiced in pain and limits the function of the
The most commonly reported side ef- many cultures as far back in time as musculoskeletal system. Increased
fects include transient headache and the ancient Roman Empire. This ba- comfort allows more freedom of
nausea. sic technique is the cornerstone for movement and access to the environ-
the management of spasticity. ment. In addition, spasticity treatment
Fatigue is present in many diseases can improve arm and leg movements
associated with transverse myelopathy. This chart identifies the different and allow performance of crucial ac-
There is data about fatigue in MS, but types and levels of intervention in tivities of daily living (ADLs) like
there is not data about fatigue associ- cerebral palsy. These concepts can dressing, cleaning, eating and hygiene.
ated with TM. There are many differ- also be applied to individuals with Treating spasticity may make it easier
ent kinds of fatigue. When we treat spasticity of spinal cord origin. It is to wear braces. For example, a plastic
fatigue, we need to identify the spe- an algorithm that describes how ankle foot brace which is also known
cific type of fatigue we are treating. treatment decisions might be made. as an AFO (ankle foot orthosis) may
Measuring fatigue is an inexact sci- Different approaches may be tried at cause blistering or redness, because
ence; the measures are very subjective. different times, depending on the the foot is being forced down by spas-
Lassitude, the most common and sig- condition of the patient. Treatments tic calf muscles. Treating these mus-
nificant fatigue in MS, remains a bit of may be divided into rehabilitative cles to reduce spasticity makes it pos-
a mystery. It must have a neuro- interventions, which include physical sible to wear the AFOs for standing or
chemical basis. There are treatments and occupational therapy, medical walking. Another reason to treat spas-
for fatigue. It is difficult to manage, interventions, which include thera- ticity is for the evaluation of the ef-
but with a team approach and the three peutic botulinum toxin injections, fects of potential orthopedic surgery
P’s, physical, psychological, and phar- oral medications, and surgical inter- designed to realign joints that have
macological therapies, we can, in fact, ventions. Surgical interventions in- been affected by the unrelenting pull
help most people who have fatigue clude orthopedic surgery, which have of tight muscles. In some cases it may
with neurologic disease. been the mainstay over the years for postpone surgery, reduce the amount
treating joint contractures (a compli- of surgical correction needed, or pre-
cation of spasticity); dorsal vent surgery. The issue of timing of
rhizotomy, which is a neuro-surgical
Table 1: Cerebral Palsy Treatment Algorithm (courtesy of Alexander Hoon, MD)

The TMA does not endorse any of the

medications, treatments or products
reported in this journal. This informa-
tion is intended only to keep you in-
formed. We strongly advise that you
check any drugs or treatments men-
tioned with your physician.
The Transverse Myelitis Association Page 55
surgical intervention is of special con- “striatal toe” which is an up-going contrast to interventions in the upper
cern in children, because of the effects toe from over activity of the muscle right hand quadrant which are general,
of spastic muscles on growing bone. that pulls the toe up. “Stiff knee” but not reversible. An example of this
gait (also called a “compass” gait) type of intervention is a selective dor-
Early in the course of spasticity, a joint occurs from over activity of the sal rhizotomy which is a surgical pro-
and the spastic muscles attached to it quadriceps muscle, “crouch knee” cedure in which nerves that affect
may be relatively flexible. Over time gait that is the result of hamstring spasticity are cut just before they enter
the amount of movement possible at a dynamic contractures, and the spinal cord. This will change the
joint decreases and function is lost. At “scissoring” from hip adductor mus- muscle tone of muscles in the lower
this point, a contracture has developed cle dynamic contractures. In the up- limbs, depending on how many nerves
and surgical intervention may be the per extremities, spasticity can cause are cut. The bottom half of the dia-
only way to regain the full range of finger, wrist, elbow, and shoulder gram represents interventions directed
motion at that joint. Intervening ag- flexion contractures. These can oc- at specific target muscles (focal treat-
gressively before this happens with a cur alone or in combination to inter- ments). Local corrective orthopedic
consistent and appropriate therapy and fere with fine motor tasks such as surgery would be an example of a fo-
stretching program augmented by eating, dressing, and hygiene. cal intervention that is permanent. A
medications, injections, physical mo- reversible and focal intervention is
dalities like heat or cold, braces, and Surgical lengthening of muscle con- chemo-denervation which is currently
serial casts is important. tractures can be performed, if the most commonly done by injecting ei-
limitation of motion is interfering ther botulinum toxin in very small
If normal muscle stretching does not with functional tasks. If surgery is amounts or phenol into targeted spastic
occur, then a joint contracture devel- being considered, it is essential to muscles with the intent to temporarily
ops. The familiar phrase: “If you clearly identify the goals, discuss all weaken those muscles to improve the
don’t use it, you lose it” definitely ap- the potential complications with the effectiveness of therapy.
plies. If muscles aren’t stretched to surgeon, plan for post-surgery reha-
their full range of motion, they will bilitation, and consider the effects of Botulinum toxin injections for thera-
physically shorten and lose structural surgery on the entire family. peutic purposes have been performed
elements called sarcomeres. In other for about 15 years, since the early
words they shrink. Fortunately, mus- One way to look at interventions for 1990s. Historically, the presence of a
cles can also add sarcomeres, if they treating spasticity is to think about biological toxin was first suspected in
are gradually and carefully stretched. interventions in terms of being either the early 1800’s by Justinus Kerner
Many rehabilitation techniques and general or focal and either reversible who investigated “sausage poisoning.”
interventions are directed toward im- or permanent. The bacteria Clostridium botulinum,
proving the length of contracted spas- from which botulinum toxin type A
tic muscles. This table is divided into four quad- was eventually purified, was first iden-
rants. The upper left hand quadrant tified as a causative agent in food poi-
There are two different kinds of con- describes interventions that work on soning more than 100 years ago (1895)
tractures. Dynamic contractures that the body as a whole (general), and in Ellezelles, Belgium, by Professor
occur during movement and fixed con- are reversible. A good example of Emile Pierre van Ermengem. It was
tractures that are present at all times. this is oral medications. This is in purified by Dr. Schantz in 1944 and in
Unfortunately, progression from dy-
namic to fixed contractures is difficult Table 2: Surgical and Pharmacologic Treatments (Modified from Graham HK,
to prevent. A dynamic contracture is et al. Gait Posture. 2000).
noticed when an individual is trying to
use a muscle to move a limb. A good
example would be walking on the toes
or extending the arm when trying to
reach for an object.

Examples of abnormal positions or

movements in individuals who have
spasticity include “equinovarus” which
is an inward movement of the foot to-
ward the midline plus toe walking, and
Page 56 The Transverse Myelitis Association
1968 Dr. Scott, an ophthalmologist, “hard” end point goes along with a the patient, such as relief of pain, then
came up with the idea of using it for fixed contracture that would not botulinum toxin may be considered.
medical reasons. Interestingly, the benefit from botulinum toxin treat-
first indications were for treating mus- ment and a “soft” end point would Some general facts about botulinum
cles around the eye that caused uncon- suggest that chemo-denervation toxin are as follows. The usual onset
trollable eye blinking or blepharo- should be considered. A “catch” of action is 12 to 72 hours after treat-
spasm and to treat strabismus which is during the stretch of a tight muscle is ment, depending on the size of the
a condition where the eye muscles are another sign of a spastic muscle muscle and the dose of botulinum
not in balance. rather than a contracted muscle. In toxin that is administered. The time to
addition, the more time that joint mo- peak effect is about seven to ten days.
The bacteria that causes botulism is tion has been limited by spasticity, This also could vary from patient to
Clostridium botulinum which is a gram the greater is the chance that there is patient. The average duration of re-
positive anaerobic rod type of bacteria. a fixed contracture present that sponse is about one to six months with
It produces an exotoxin which blocks would not respond to botulinum an average of three months. This is
the release of acetylcholine molecules toxin treatment. also variable and depends upon the
at the site where the nerve that controls amount of spasticity versus contracture
muscle contractions is connected to The distribution of the affected mus- in the target muscle and the patient’s
individual muscle fibers. Acetylcho- cles is another consideration in the unique response to botulinum toxin.
line molecules act as neurotransmitters decision to treat with botulinum Typically, we say a reinjection interval
which activate muscles. Botulinum toxin. A focal intervention like should be about 12 weeks.
molecules block the release of acetyl- botulinum toxin is most useful when
choline from vesicles that store up a beneficial effect from selectively Botulinum toxin and oral medications
these molecules in the nerves. Clos- weakening specific muscles around a are just one part of the overall treat-
tridium botulinum produces eight dif- joint can be identified. For example, ment plan for spasticity. The mainstay
ferent kinds of neurotoxin of which muscles that flex the elbow may be of treatment is therapy that consists of
only two, type A and type B, are used overactive and prevent the individual stretching, movement, and specially
for chemo-denervation. from reaching out for an object. If designed techniques to enhance the
the elbow flex or muscles, especially development of coordinated and func-
The effect of the botulinum toxin the biceps are weakened, then the tional skills. A well thought out thera-
molecule on the nerve ending is re- therapist can stretch out the biceps, peutic plan is essential and should be
versible. The botulinum neurotoxin extend the elbow, and potentially in place before botulinum toxin is
doesn't kill the nerves; it temporarily improve reaching for objects. given. Elements of a well designed
shuts it off. therapy plan would include appropri-
Sometimes a botulinum toxin injec- ate splints to maintain a stretch across
Perhaps the most important question in tion is used to decide whether a per- joints, “homework” provided by the
the management of spasticity with in- manent focal intervention like ortho- therapist that fits in with the family’s
jections of botulinum toxin or other pedic surgery would be of benefit. A schedule, a variety of exercises to keep
interventions is to decide upon the spe- good example of this would be treat- up interest, and clear goal setting.
cific goals for treatment. Before giv- ing tight calf muscles that cause toe
ing a botulinum toxin treatment, it is walking. If there is a good effect Demonstrating that a functional bene-
important to have agreement between from the botulinum toxin in terms of fit comes from relaxing spasticity with
the patient and their family, physi- bringing the heel down to the ground botulinum toxin has been difficult to
cians, and therapists as to the expecta- thus allowing walking with flat foot, demonstrate scientifically. This may
tions for what the botulinum toxin is then a surgical lengthening of the be because it is hard to form treatment
going to do so that unrealistic expecta- calf muscles may be considered. groups in which half of the patients
tions are avoided. receive placebo and not botulinum
If a patient has muscle tone that is toxin and because it is really hard to
When examining someone for severe and spread throughout the enroll a large enough group of subjects
botulinum toxin injections, it is impor- body, then botulinum toxin may not where each person has the same type
tant to determine if limited range of be a good intervention, because there and severity of spasticity. Neverthe-
motion is due to spasticity or to muscle is a limit to how many muscles you less, when individuals and not groups
tightness from fixed contractures. At can inject. However, if certain key are studied, beneficial results from
the end of a muscle stretch, is there a muscles can be injected that would botulinum toxin injections are usually
“hard” or a “soft” end point. The result in an identifiable benefit for reported.
The Transverse Myelitis Association Page 57
Table 3: Comparison of localization techniques for botulinum toxin injections like local bruising, tenderness, and
swelling. One of the adverse effects
that is pertinent to transverse myelitis,
is local weakness which may affect
surrounding muscles. Some patients
who have had adductor muscle injec-
tions complain that they temporarily
have new or worse urinary inconti-
nence. Problems walking after
One of the most convincing articles small electrical shock is applied to
botulinum toxin treatment have been
that demonstrates the practical useful- determine if the intended target mus-
reported following injections to leg
ness of botulinum toxin appeared in cle moves. The most recent addition
muscles during the period of adjust-
the New England Journal of Medicine to techniques for identifying the right
ment that occurs after treatment. This
(Brashear et al. NEJM 347: 395-400, muscle and right site for treatment is
problem is correctable with therapy. It
2002). This study used a patient- ultrasound imaging that gives a pic-
is important to discuss this possibility
centered outcome measure to deter- ture of the muscle.
with your therapist, before you get the
mine the effects of botulinum toxin
botulinum toxin. In addition, it is es-
injections on spastic wrist muscles. This chart compares the various
sential to go over all side effects with
The researchers asked the patients to characteristics of localization tech-
the physician before the treatment and
identify what they wanted the niques. Inspection is quick, painless
to sign a consent form.
botulinum toxin to do before they got and the accuracy is fair. EMG signal
the injection. They were given a list of amplification takes less than a min-
I will conclude this article with a dis-
three or four possible choices. After ute to perform. It is more accurate
cussion about oral drugs to treat spas-
the injection, the patient was asked than inspection, but not as specific as
ticity. In general, I have been disap-
whether it did what they thought it other techniques. Electrical stimula-
pointed with the effectiveness of medi-
would do. This study satisfied the tion might take longer, but it is
cations. That being said, there are
most stringent criteria for a reliable probably the most specific technique.
some oral medications that should be
research study. It was a double blind, Ultrasound takes longer time and it is
tried, because they can have a potential
placebo controlled, randomized trial. specific, but it requires technical skill
benefit and can be used to decrease the
The researchers were able to demon- and experience to be able to correctly
“background” intensity of spasticity.
strate that the group that got the interpret the images.
They can also be used in conjunction
botulinum toxin did achieve the func-
with botulinum toxin when additional
tional goals that they wanted from the Unfortunately, botulinum toxin injec-
relaxation of specific target muscles is
botulinum toxin statistically more of- tions do hurt. A useful approach to
desired and a specific therapy plan is
ten than the patients who got placebo. minimize discomfort is considerate
in place. Unfortunately, oral drugs do
anticipatory guidance. This consists
have side effects since they are ab-
Identifying the best place to inject the of telling the patient what’s going to
sorbed into the blood stream and circu-
botulinum toxin is an important issue. happen by describing the technique
late throughout the body. They are
There are hundreds of thousands of in a step-by-step fashion and then
chemicals that bind receptors in the
nerve endings in the muscles. A vari- using distraction during the proce-
central nervous system and have the
ety of techniques can be used to iden- dure. Local numbing cream (e.g.,
potential to depress multiple higher
tify the optimal area in the target mus- EMLA) or spray (e.g., ethyl chloride)
cortical functions, such as alertness,
cle in which to administer botulinum is often used to reduce the pain of the
memory, and concentration.
toxin. The most common technique is injections and as a distractor. In
simple inspection of the muscle for some cases, a stronger analgesic or
Most of the these drugs alter the func-
bulk and tautness using knowledge of sedative is used. My bias is that the
tion of neurotransmitters or neuro-
human anatomy. The use of an EMG risk of side effects from these drugs
modulators in the central nervous sys-
(electromyographic) signal which pro- outweighs the benefits and I prefer
tem by suppressing excitation through
duces a characteristic sound to identify not to use them.
blocking a chemical messenger called
an area in the muscle where there are
glutamate, or they enhance inhibition
nerve endings is sometimes also used Fortunately, treatment with
of excitation by activating another
to improve the accuracy of treatments. botulinum toxin has a very low inci-
chemical messenger like glycine. A
For small muscles, electrical stimula- dence of side effects. These are
third mechanism of action is directly
tion may be used. In this technique, a mostly related to the injection itself,
on the membranes of the muscles re-
Page 58 The Transverse Myelitis Association
sulting in weakness. that suggests that appropriate thera- increase the chances of a TM reoccur-
peutic exercises in combination with rence. Having multiple lesions in the
Side effects from oral medications to preventative measures, such as spinal cord or in the brain, a mixed
treat spastic muscle tone can be insidi- stretching with well made splints, connective tissue disorder, oligoclonal
ous and under recognized. These in- can result in increased function. We bands and serum auto-antibodies in the
clude alterations in thinking, alertness, are learning that the central nervous cerebrospinal fluid can all be factors
mood, and personality. It is prudent to system is a great deal more change- that put the patient at risk for another
start at a low dose and then gradually able than we had previously thought. attack or conversion to MS.
increase the dose looking both for ef- The challenge is to find the right
fectiveness and side effects. combination of interventions that Most patients with TM experience
will help to make those changes hap- spontaneous recovery within 6 months
Despite these drawbacks, oral medica- pen. and recovery may continue for up to 2
tions may be successful and should be years after symptom onset. It has been
considered as part of the general medi- reported in the literature that 1/3rd of
cal approach to managing spasticity. Demyelinating Disorders: the patients with TM have good out-
Update on Transverse comes and 1/3rd worse outcomes. In
Passive function requires sufficient Myelitis the patient cohort followed at JHTMC,
flexibility and looseness of limbs for Chitra Krishnan, MHS, Adam I. there is likely a referral bias for severe
caregivers to perform activities that Kaplin, MD, PhD, Carlos A. cases with only 20% of patients who
patients cannot perform by themselves. Pardo, MD, Douglas A. Kerr, MD, had a good outcome. Recent studies at
Active function, on the other hand, is PhD, and Sanjay C. Keswani, the JHTMC suggest that abnormally
what the patient can do alone. Active MBBS, MRCP high levels of cytokines, especially IL-
function requires active range of mo- 6, may suggest poor prognosis and
tion, strength, attention, alertness and a Original Publication: Current Neu- recurrence.
good mood. Thus, the problem with rology and Neuroscience Reports
using oral medications is that while it 2006, 6:236–243 TM affects all ages with bimodal
may be possible to enhance both com- peaks at 10-19 and 30-39 years, and
fort and passive function it may be This article is an update on Trans- there is no gender or familial predispo-
more challenging to provide a medica- verse Myelitis (TM) based on our sition. Clinical characteristics at onset
tion that will improve comfort and ac- experience at the Johns Hopkins include weakness that occasionally
tive function. Unfortunately this is Transverse Myelitis Center progresses to the upper extremities
often the goal; you want to feel more (JHTMC). TM is a monophasic followed by spasticity. Pain, paresthe-
comfortable, but you also want to be monofocal demyelinating disorder of sias, urinary urgency, bowel or bladder
more active. the central nervous system and can or sexual dysfunction are other fea-
be classified as idiopathic or disease tures of TM at acute onset. Dr. Kaplin
Whenever there is a long list of medi- associated. We diagnose disease- and his colleagues have found a high
cations to treat a condition, it indicates associated TM when there is direct prevalence of depression in patients
that there is no one best medication, evidence of illness, such as lupus, with TM. However, it is shown that
and that the search is ongoing for the sarcoidosis or infection, such as her- the severity of disability does not cor-
ideal drug. Often times, there is an pes myelitis, varicella zoster mye- relate with depression. It is currently
initial enthusiasm for a new drug and litis. Idiopathic TM, on the other hypothesized that cytokines, or im-
then it is determined that the drug hand, is when there is no known un- mune messengers, in the brain play a
doesn’t work as well as initially be- derlying cause of the acute myelitis role in depressed mood. In our case
lieved. onset. Of the 356 cases reported in series, depression resulting in suicide
the 36 months prior to publication of is the leading cause of mortality in
In conclusion, interventions for spas- the paper, 64% were idiopathic. TM TM, accounting for 60% of the deaths
ticity can be divided into treatments can be a presenting feature of MS in that we have seen in our clinic
that affect the entire body or just spe- patients who have an abnormal brain (Kaplin, Unpublished observations).
cific target muscles and into treatments MRI at acute onset or other features, Regardless of the correlation, it is very
that are either permanent or reversible. such as oligoclonal bands in the cere- important to detect and treat depres-
Surgeries, oral medications, and injec- brospinal fluid. sion.
tions are “add ons” to the therapy pro-
gram. They are not a substitute for the Though largely monophasic in 75- Histopathologic studies of spinal cord
therapy itself. There is good evidence 90% of patients, several factors can tissue obtained from biopsies and au-
The Transverse Myelitis Association Page 59
topsies of TM patients reveal evidence Sanford Siegel. The TMA serves a breakdown of subjects by disorder:
of focal spinal cord inflammatory critical role to the TM community
changes - perivascular infiltration by and to researchers striving to under- 84 Controls
monocytes and lymphocytes in addi- stand and treat this disorder. 4 CIS (clinically isolated syndromes)
tion to astroglial and microglial activa- 204 MS
tion. Demyelination in spinal cord 2 NMO
white matter tracts and axonal injury We need people with TM, 1 ON
and loss is also revealed, with the lat- ADEM, NMO and ON to 8 TM
ter known to correlate with disability. enroll in the Accelerated
Cure Project Study! No one with ADEM has enrolled in
IV steroids are a common treatment the ACP study. Only eight people
that is shown to increase ambulation as with TM have enrolled in the study.
well as motor recovery. Plasma ex- For more than a decade I have talked The interesting and amazing aspect of
change (PLEX) is used in more severe to hundreds of people about their this for me is that when I am talking to
cases that may not respond to steroids. experiences with TM, ADEM and almost everyone on the phone, there is
Predictors of good response to PLEX NMO. There is no question that con- often a palpable and intense frustration
include early treatment (< 20 days cerns people more than how they got and anxiety that surrounds the medical
from symptom onset) and a clinically their condition. For most people, community not understanding the most
incomplete lesion. Cyclophosphamide their physician is unable to provide basic questions about what happened
is a chemotherapeutic drug that helps them with this answer. This is a dis- to their bodies. Some people have an
to kill the multiplying immune cells concerting and frustrating situation extremely difficult time “letting go” of
that cause cord destruction and is also and they are left feeling confused, the notion that they might not ever get
used in aggressive and fulminant cases disappointed and frightened by the this critical question answered. If I
of TM. All of these treatments are absence of a medical explanation as told them during our conversations
given right after an attack for a brief to the causes of their condition. that they could actually do something
period. If the patient is at risk for re- to contribute to finding this answer
currence, chronic immunomodulatory Much has been learned about TM in and it wouldn’t cost them any more
therapies are recommended. the past eight years, but there remain than their time and a blood draw, al-
so many unanswered and critical most everyone would jump at the
There are several novel therapies that questions. What caused the immune chance to make that difference. We
are currently under investigation. One system to become dysfunctional? finally have this opportunity to person-
involves filtration of the CSF which Did genetic factors play a role in this ally contribute to finding the answer to
removes all of the attacking immune process? Are there environmental this most basic question – why did this
cells from the fluid surrounding the factors involved, and if so, what fac- happen to your body? I know that you
spinal cord and has been used in tors could be implicated in triggering want that answer. I am pleading with
Europe in a clinical trial in acute in- the dysfunction? you to help us find it!
flammatory demyelinating polyneuro-
pathy compared to PLEX and was After decades of unanswered ques- Please read Jana’s recruiting article.
found to be at least as effective and tions and the lack of resources to She provides details about the project,
better tolerated. A neuroprotective delve into a comprehensive study, we as well as contact information for each
approach to treating TM is also being finally have an incredible opportu- of the study centers. If you live in
studied as axonal injury and loss in nity to initiate research to address Baltimore, Boston, Atlanta, Dallas,
TM likely correlates with permanent these critical issues. The Accelerated New York, or Phoenix, or if you live
neurologic disability. Clinical trials to Cure Project has provided research- within driving distance of one of these
study the combined approach of anti- ers with the resources they will need cities, please get in touch with the ap-
inflammatory and neuroprotective to focus on these most basic and cru- propriate study coordinator identified
therapies using erythropoietin will cial questions about the causes of in Jana’s article. We have hundreds of
commence this summer at the MS, TM, ADEM, NMO and ON. members within driving distance of
JHTMC. these centers who have TM, ADEM
People have been enrolling in the and NMO. These are amazingly com-
Acknowledgment ACP study over the past year. Thus plex disorders; there is likely a great
We acknowledge the support and ef- far, 303 subjects have contributed deal of variability between these disor-
forts of The Transverse Myelitis Asso- blood samples and have filled out the ders and within each of these disor-
ciation (TMA) and its president questionnaire. This is the current ders. As is the case with MS, we will
Page 60 The Transverse Myelitis Association
need large numbers of people reflected cated throughout the country will patients receiving care outside of
in the studies in order to have a chance serve as coordinating project sites, Johns Hopkins or patients who are not
to understand the causes of TM, creating a national network of collec- already in the Johns Hopkins medical
ADEM, NMO, and ON. tion sites. Study enrollment is tar- record system may be subject to addi-
geted at 10,000 subjects over the tional enrollment requirements.
The Accelerated Cure Project has next ten years. Enrolled subjects will
worked very hard to receive approval be asked to contribute personal data Please note, the enrollment require-
to include children in the repository. (such as medical history and family ments and participant compensation
This is critically important because of information) and biological samples. may vary by study site. If you are in-
the large numbers of children who get The personal data collected from all terested in getting involved, please
TM, ADEM and NMO. The Study subjects will be combined into a sin- contact your nearest participating cen-
Centers are working on this process, gle database while the biological ter for further information regarding
but not all of the centers have received samples will be processed at a central the enrollment process.
local approvals. Please ask the study laboratory and stored. The complete
center coordinator when you call, if anonymity of study participants will In addition to enrolling subjects with
they are now enrolling children in the be protected. The result will be the one of the specified demyelinating
ACP study. It is important that we creation of a comprehensive informa- diseases, we are asking participants to
have as many children as possible rep- tion system and specimen repository refer affected and unaffected relatives
resented in the study. from which researchers can request to join the study. We also welcome
samples to conduct in-depth analyses unaffected matched “controls” (such
The Accelerated Cure Project is begin- on various demyelinating disease as a childhood friend who grew up in
ning the process of initiating studies aspects. This study will play an im- the same area as you or a long-time
from the repository. We need people portant role in increasing the current spouse) for participation in the study.
with ADEM, NMO, ON and TM to knowledge of rare neurologic dis-
enroll in this program as soon as possi- eases and therefore aid researchers in This is a very exciting opportunity for
ble. It will not cost you a penny; it the development of better diagnostic both patients and researchers around
will only cost you some time. Please techniques and cures for these dis- the country to take part in a large-scale
make this important effort to help us eases. dynamic project that will work to im-
and please make this effort to help prove our knowledge about demyeli-
yourselves! Now this is your chance to help! We nating diseases. We welcome enthusi-
are enrolling patients with multiple asm and positive attitudes! By volun-
Recruiting for ACP Study: Help sclerosis, transverse myelitis, optic teering your time and effort to this pro-
us to find the causes and cures neuritis, acute disseminated encepha- ject, you will be making a significant
for TM, ADEM, NMO, MS and lomyelitis, neuromyelitis optica contribution to the development of
the other neuroimmunologic (Devic’s) or clinically isolated syn- new treatments, and ultimately a cure,
disorders dromes (one demyelinating attack, for these diseases.
Jana Goins but not fulfilling the diagnostic crite-
ria for MS). Those who are currently Participating Centers
patients at Johns Hopkins will be
The Johns Hopkins University is able to join the study without a refer- Johns Hopkins Medical Institution
working in conjunction with the Ac- ral from their physician, and will just (Baltimore, MD)
celerated Cure Project for Multiple need to contact the Johns Hopkins Jana Goins
Sclerosis (ACP) to conduct a large project coordinator for study enroll- [email protected]
scale research study which will play an ment information. Johns Hopkins (410)502-6160
important role in determining signifi- patients who are aware of their next
cant causal factors and disease trends scheduled clinic date may get in UMass Memorial (Worcester, MA)
for demyelinating disorders, such as touch with the project coordinator Janice Weaver
Multiple Sclerosis (MS), Transverse beforehand in order to schedule a [email protected]
Myelitis (TM), Optic Neuritis (ON), study meeting during this clinic visit. (508)793-6562
Devic’s Syndrome (NMO), Acute Dis- Subjects participating at Johns Hop-
seminated Encephalomyelitis (ADEM) kins will be mailed a $25 check to Shepherd Center (Atlanta, GA)
and other related diseases. compensate for minor study ex- Elizabeth Iski
penses, but will not be reimbursed [email protected]
Several major academic centers lo- for any travel expenses. At this time, (404)350-3116
The Transverse Myelitis Association Page 61
University of Texas Southwestern
(Dallas, TX)
Gina Remington
[email protected]
(214)645-0560

Multiple Sclerosis Research Center of

New York (New York, NY)
Emily Denicore Eisenberg
[email protected] The Johns Hopkins Project RE- rect and participate in fundraising for
(212)265-8070 STORE was founded in August 2004 RESTORE activities.
as a multidisciplinary clinical and
Barrow Neurological Institute research effort to develop new basic SCIENTIFIC UPDATE
(Phoenix, AZ) research and clinical therapies in
Taira Kochar multiple sclerosis (MS) and trans- Since its inception, Project RESTORE
acp-study-barrow verse myelitis (TM). RESTORE has raised approximately 1.5 million
@acceleratedcure.org evolved out of the separate MS and dollars through philanthropic effort, all
(602)406-6292 TM Centers at Hopkins and links of which has been applied to the fol-
basic science with clinical research lowing scientific initiatives summa-
Study Sponsor and clinical care and allows research- rized below.
ers to share resources and effort in
Accelerated Cure Project developing new approaches to diag- Biomarkers of TM/MS are necessary
Sara Loud nose and treat neuroimmunologic to define disease subgroups and re-
[email protected] disorders. The Johns Hopkins lead- sponse to therapy:
(781)487-0032 ership of this program includes Dr.
www.acceleratedcure.org Based on our initial research findings
Peter Calabresi, Director of the MS on the role of IL-6 as an important bio-
Center, and Dr. Douglas Kerr, Direc- marker of TM involved in the neural
Neuroimmunologic Disorders Sample tor of the TM Center. Chitra Krish-
Respository: injury of TM, which was published in
nan is the Executive Director and The Journal of Clinical Investigation,
http://www.acceleratedcure.org/ oversees the clinical, research, edu-
curemap/tissuebank.php research is now underway to examine
cation and fundraising efforts of Pro- the immune cell types that are in-
ject RESTORE. volved in the up regulation of IL-6
production by astrocytes in the CNS
To help achieve the goals of Project and to explore the different pro-
The Transverse Myelitis Association is RESTORE, we have a Board of Am-
proud to be a source of information inflammatory cytokines produced by
bassadors whose members include immune cells that regulate IL-6 pro-
about Transverse Myelitis and the leaders from all areas of professional
other neuroimmunologic disorders. duction. Our preliminary data suggest
endeavor, including grateful patients. that IL-6 production from peripheral
Our comments are based on profes- The Chairman of the Board is Mr.
sional advice, published experience immune cells is the most potent in-
Bruce Downey, CEO and President ducer of CNS astrocyte IL-6.
and expert opinion, but do not repre- of Barr Pharmaceuticals, Inc., Vice-
sent therapeutic recommendations or Chair is Mrs. Cindy McLean from In studies to define the upstream
prescriptions. For specific information Atlanta, GA. The Transverse Mye- ‘triggering’ events in autoimmunity,
and advice, consult a qualified physi- litis Association and The Cody Unser IL-17 is known to be a critical media-
cian. The Transverse Myelitis Asso- First Step Foundation are also on our tor of disease by regulating other cyto-
ciation does not endorse products, ser- Board of Ambassadors represented kines known to stimulate IL-6 produc-
vices or manufacturers. Such names by Sandy Siegel, Cody and Shelley tion. Our data suggests that IL-17 and
appear in this publication solely be- Unser. The Board holds semi-annual IL-6 production from peripheral blood
cause they are considered valuable meetings where it discusses and ad- mononuclear cells in TM and early
information. The Transverse Myelitis vises Ms. Krishnan and the rest of MS is increased and may induce astro-
Association assumes no liability what- the scientific team about RESTORE cyte IL-6 production through another
soever for the contents or use of any activities. The Board is asked as one cytokine, IL-1β.
product or service mentioned. of its primary responsibilities to di-
Page 62 The Transverse Myelitis Association
Animal models are required to model In a recent study published in the stand the downstream signaling path-
human disease to develop new thera- Annals of Neurology, Dr. Calabresi way to further dissect how myelin pro-
pies: and his team have identified voltage teins communicate with the axon. It is
Animal model of MS: gated potassium channels on immune hoped that by understanding how mye-
We have utilized an established model cells and have suggested that target- lin proteins are neuroprotective, it
of MS (termed EAE) to define neuro- ing these channels may be a promis- could lead to novel approaches to
protective strategies and novel immu- ing therapeutic target in MS. These therapeutic interventions for rare
nologic therapies (i.e. Kv1.3, FLT3) channels are expressed on a special neuroimmunologic diseases.
Animal models of TM: type of immune cell called the den-
We continue to study animal models dritic cell (DC), which is responsible Innate Autoimmunity
of TM caused by immune cells mov- for activating the T cells in MS and Autoimmune diseases often result
ing into the spinal cord and using IL-6 other autoimmune conditions, thus, from inappropriate or unregulated acti-
that causes spinal cord degeneration impacting the disease course. Al- vation of autoreactive T cells. Tradi-
Animal model of NMO: though, more functional studies need tional approaches to treatment of auto-
We are creating an animal model of to be performed to confirm this, this immune diseases through immunosup-
NMO (Devic’s disease) in order to work holds promise as a novel way pression have focused on direct inhibi-
understand the pathogenic features of of modulating the immune response tion of T cells. However, one line of
NMO-IgG and other contributors in MS, affecting the course of im- investigation that we have recently
mune cell reactivation and infliction completed is to inhibit the innate auto-
Mechanisms of neurodegeneration of damage in the brain. immune cells that initiate the T cell
We have recently identified a key response. This work, published in the
We have learned how axon structure Proceedings of the National Academy
and function is supported by glial cells enzyme released by activated T cells
that causes damage to the nerves – of Sciences, showed that inhibition of
(myelin-producing cells). the FLT3 (CD135) receptor resulted in
Granzyme B.
We have developed a cell culture markedly attenuated “MS” in an ani-
model of CNS myelination and are High dose Cytoxan in aggressive mal model. This work, using small
exploring the fundamental conse- MS molecule inhibitors of receptor func-
quences of demyelination and inflam- This is an ongoing human clinical tion, suggests a potential mechanism
mation. trial in aggressive MS that may in- for treating autoimmune diseases. We
duce long term remission. have further found high expression of
We have learned how other glial cells
FLT3 in MS brain tissue, and we con-
(microglia) can injure neurons. To date, we have spoken with or dis- tinue to understand when and how this
We have established a model in which cussed the study with more than 50 receptor is turned on during inflamma-
we can study the direct damaging ef- patients who expressed an initial in- tion.
fects of T cells to nerve cells. terest in the study, and have enrolled
9 patients into the trial. Three pa- Neuro-Imaging
Inflammatory mechanisms of neu- tients have completed 2 years in the We have made tremendous progress in
rodegeneration study. enrolling patients in the imaging clini-
Dr. Carlos Pardo continues to charac- • No patients had serious side ef- cal trial. The goal of this study is to
terize abnormalities in the brain and fects correlate magnetic resonance spectro-
spinal fluid of patients in which neuro- • All patients except one either scopic imaging (MRS), magnetization
inflammatory reactions are involved. improved or remained stable transfer imaging (MT), and diffusion
Novel proteomics-based approaches with no further relapses. tensor imaging (DTI) with the ex-
for studying multiple proteins in fluids panded disability scale (EDSS) and
and tissues from patients with neuroin- Neuroprotection multiple sclerosis functional composite
flammatory disorders such as MS, TM, We have recently discovered that one (MSFC) to assess the predictive and
epilepsy and autism are being tested. of the myelin associated proteins in- concurrent validity of these. The aim
We are currently correlating these duces a protective pathway prevent- of this study is to classify individuals
findings with imaging and clinical out- ing nerve fibers and axons from de- based on measures of disability, char-
comes in patients with autism, Ras- generation. Moreover, we have acterize their walking patterns, in or-
mussen's encephalitis, MS and TM. found a novel receptor on axons that der to detect specific kinematic defi-
This project has been made possible mediates this protective pathway. cits, and use this information to direct
through Mrs. Sharon Umphenour’s We have continued to further under- future rehabilitative strategies. We
philanthropic gift. predict that impairments of spasticity
The Transverse Myelitis Association Page 63
and ataxia seen in MS can be used as heartfelt gratitude to Scott Harrison, Associates of Norwalk and aQuantive
functional indices of damage to spe- his partners, Richie Felder and Dean (Avenue A | Razorfish).
cific spinal cord pathways that leads to Kapneck, and all of the staff at The
FUTURE GOALS
measurable differences in walking pat- Boys Entertainment.
terns. To date, we have enrolled 55 Our financial goal for the next year is
Project RESTORE at the 2006 OX to raise $3.2 million dollars which will
patients into this study. Preliminary
Ridge Charity Horse Show support the following:
data has revealed that this imaging
At the Ox Ridge Charity Horse Show
technique can detect cord disease in Three research fellows (training physi-
in Darien, CT from June 16th to June
MS and is more strongly correlated cians) to train in the Division of
18th, 2006, Christine Fitzgerald-
with clinical status than a measure of Neuroimmunology both in basic sci-
Dodge and Serendipity Equestrian
atrophy. ence and clinical research ($300,000)
Products raised funds and awareness
for Project RESTORE by sponsoring Endowment of $1 million dollars to
Neuroregeneration
a booth and a silent auction. Con- fund certain projects and personnel in
Our research work on the potential of
gratulations Christine on a fantastic perpetuity
embryonic stem cell–derived motor
fund raiser and awareness campaign!
neurons to functionally replace those Nursing/clinical coordinator personnel
cells destroyed in paralyzed adult rats Project RESTORE Honored at the to carry out clinical trials ($200,000)
was recently published in the Annals GPhA Charity Golf Outing $500,000 for myelinating and paralysis
of Neurology (Ann Neurol 2006; 60: The Generic Pharmaceutical Asso- stem cell projects
32–44). We have shown that restora- ciation - GPhA - served as the host
tion of functional motor units by em- sponsor of a golf tournament at Tour- $250,000 for imaging MRI projects
bryonic stem cells is possible and nament Players Club at Avenel in $200,000 for proteomics/diagnostic
represents a potential therapeutic strat- Potomac, Maryland on September projects
egy for patients with paralysis. This is 18, 2006 that raised nearly $200,000 $250,000 for neuroprotection projects
the first report of the anatomical and to benefit The Johns Hopkins Project
functional replacement of a motor neu- RESTORE. Our heartfelt gratitude to $500,000 for center equipment/
ron circuit within the adult mammalian all of the generous donors, sponsors microscopy
host using a unique combination of and volunteers for their support. Ea-
growth factors to attract transplanted gle sponsors included Barr Laborato- Spinal Cord Injury
embryonic stem cell–derived axons ries, Mylan Laboratories, and Teva Volunteers are Needed for
toward skeletal muscle targets. Pharmaceuticals. Birdie sponsors Neuropathic Pain Trials
included Williams and Connolly LLP
FUNDRAISING EVENTS and Winston and Strawn LLP. Par
sponsors included Actavis, Kirkland
A number of successful fundraising The Translational Pain Research
and Ellis LLP, and Sutherland Asbill
and awareness events were held during Group at the Brigham and Women’s
& Brennan LLP.
the past year. Hospital is conducting clinical trials
Project RESTORE 5K Family that evaluate various medications to
The First Annual Project RE-
Walk/Run help relieve chronic neuropathic pain
STORE Charity Golf Outing spon-
October 15th, 2006 in New Canaan, as a result of a Spinal Cord Injury
sored by The Boys Entertainment
CT, friends, family, well-wishers and (including TM, NMO and ADEM).
The Dellwood Country Club in Rock-
supporters gathered for the first an- You may be eligible for this research
land County, NY was the venue for the
nual Project RESTORE 5K walk. study if you:
First Annual Project RESTORE Char-
RESTORE Ambassadors Bob and
ity Golf Outing Sponsored by The
Robin Lord spearheaded this event to • Are 18-70 years old
Boys Entertainment on June 19, 2006.
celebrate Bob’s recovery and to raise • Have been diagnosed with a spinal
More than 140 golfers played at the
awareness. The event raised well cord injury
event which was followed by a star-
over $20,000! Organizing this event • Have had chronic neuropathic pain
studded silent auction, attended by
was a huge endeavor and the Lords for at least 3 months
Allan Houston, Kurt Thomas, Rodney
were supported by Bob’s sister,
Hampton, Herb Williams and others.
Nancy, and all his family and friends, For more information call 1-617-525-
The event raised about $100,000 for
Dr. Peter Hasapis and Dr. James Sla- PAIN (7246) or email us at:
research on rare neuroimmunologic
ter from the New Canaan Medical [email protected].
disorders, such as MS and TM. Our
Group, Dr. Amy Knorr -- Neurology
Page 64 The Transverse Myelitis Association
Obstetric Issues and the Neuroimmunologic Information and Support
Disorders: Information and Support Network Network
Donna Chattin

From Darkness to Light

Introduction committed to assisting Donna in this
Paula Lazzeri work. Donna has set up an OB bul-
letin board that may be accessed This particular journey in my life be-
through the TMA web site and will gan in October of 2005. I’m sure that
It is my pleasure to be writing again many of you can relate to being fine
about TM and pregnancy. My last ar- respond to any questions you pose in
her forum: http://www.myelitis.org/ one day and not so fine the next. I
ticle was included in the January 2000 awoke early on a Saturday. My legs
newsletter entitled, “My Life as Mama phpBB2/viewforum.php?f=28.
didn’t feel right; like they were asleep
Zoom.” In the article I shared the and a little sluggish. I wasn’t in any
story of my pregnancy and delivering Through this work, we hope to create
a valuable resource for our members pain and hoped the strange feeling
my son, Jesse, after getting TM. My would pass. As you may guess, the
husband, Myk, and I are so proud of that will offer both information and
support for women experiencing or feeling didn’t go away, the numbness
Jesse and what a wonderful person he increased and it started to hurt if I
has become. Raising Jessie has been planning pregnancy and delivery.
She has also compiled and published touched my body from the waist down.
such a joy and we are blessed that he is Fearing something strange was defi-
happy and healthy. He has grown up an information brochure about ob-
stetric issues and TM. This brochure nitely going on, I went to the ER on
so fast and is now 14 years old. We Monday morning, instead of going to
frequently hear from friends, teachers can also be found on the TMA web
site: work as a registered nurse.
and relatives that Jesse is a great kid.
Children being raised in homes with http://www.myelitis.org/
obstetrics.htm. I have come to understand that my
parents that have TM are seeing life in experience was similar to others. The
a beautiful way. Jesse is amazingly ER doctor could not understand what
sensitive and is able to accept all peo- Donna has provided us with a sum-
mary of the contents of the brochure was going on. Blood tests didn’t reveal
ple no matter their differences. His any clues. They decided to “take my
kindness is definitely noticed by other for this TMA Journal.
symptoms seriously” because I was a
kids. I’m excited to watch him con- nurse in the very same hospital. A
tinue to grow and share his gift with Sandy Siegel, the TMA President,
often refers women involved in the MRI was done which revealed an in-
the world. flammatory lesion in my thoracic
information gathering process to me.
I share my story, answer any ques- spine. “Well, we are sorry to say you
Pregnancy and TM has always been a have MS,” they told me. I was admit-
topic of interest, and many women tions, and encourage people to speak
with a high risk obstetrician. We ted for a full course of IV steroids,
have contacted the TMA seeking in- additional MRIs and a possible lumbar
formation. Thanks to the wonderful have asked some of these women to
write about their experiences for this puncture.
efforts of Dr. Benjamin Greenberg,
one of our TMA medical advisory journal, and we are so grateful that
they have been willing to do so. After hearing this news, this diagnosis,
board physicians, we now have a new I tried my best to come to terms with
resource to assist people in our com- Sharon, Cossy, Harriet, Kim, Kimm,
and Yvonne, we so much appreciate it. What would this mean for me and
munity with these important issues. I for my family? The next day I had a
am very proud to introduce Donna your willingness to serve as a re-
source for others. Your courage is so brain MRI. The neurologist seemed in
Chattin, a labor and delivery nurse total disbelief to find I had no evidence
who got TM in October 2005. Donna very inspiring. I hope that you find
these stories as encouraging and in- of any lesions in my brain. He said,
has written an article introducing her- “Well, you probably don’t have MS;
self to our community, and describing formative as they were for me.
let’s hope this is a one-time episode.”
her TM experience. She works in an He never called it Transverse Myelitis.
OBGYN practice, and has graciously I was struggling to understand what
been offered support by a high-risk ob- was happening.
stetrician who will assist Donna in re-
sponding to questions about TM and I was never told and really never knew
pregnancy. Dr. Greenberg has also that steroids could make you feel like
The Transverse Myelitis Association Page 65
you were losing your mind. Simulta- part-time, and then after six-months, complications, pain management with
neously, I became very depressed. I I had recovered enough to work full- epidural/spinal anesthesia, delivery
could not work. I was experiencing a time. I cannot express how blessed experiences/complications and post-
multitude of symptoms and didn’t and grateful I feel to have recovered partum experiences.
really know what was happening to as well as I have. I am not com- Jim has set up the Women’s Heath
me. I sought help from my internist. pletely perfect, but I am doing very Issues and Pregnancy Forum on the
He was the first doctor to use the term well. There will always be a little TMA web site from the following link:
Transverse Myelitis. After doing sense of uncertainty as to what the http://www.myelitis.org/phpBB2/
some investigating, I realized that my future may hold, but this, of course, viewforum.php?f=28
condition and symptoms definitely is the case for everyone in life; there
seemed to fit the diagnosis of TM. are no guarantees. We must make I welcome any comments, feedback,
During all of this, I tried to return to the most of what is ours today. sharing of personal OB experiences,
work - what a disaster. Between the and questions. My email address is
overt neurological symptoms, pain and It was in this vein that an idea was [email protected].
depression, I was barely able to make born. I asked my physician at the
it through that one horrible day. Transverse Myelitis Center what I Obstetric Issues and the
Would I ever be a nurse in Labor and could do to get involved to help oth-
Delivery again? I didn’t think so at ers with TM. I was interested in Neuroimmunologic
that point. helping not just from the perspective Disorders: Brochure on
of a patient, but also with the experi- TMA Web Site
I guess it is true, sometimes you have ence of a nurse. He came up with an
Donna Chattin
to hit rock bottom in order to start go- idea that would utilize my experience
ing back up again. Well, I felt I was at as a Labor and Delivery Nurse and
Women who are pregnant or contem-
the bottom. It was about then that a incorporate my own experience with
plating pregnancy can access informa-
friend, who happens to be a Nurse TM. He told me that a real void ex-
tion via The Transverse Myelitis Asso-
Practitioner at Johns Hopkins, told me ists regarding information and sup-
ciation website regarding obstetrical
about the Transverse Myelitis Center port for women (TM patients) con-
issues faced by women with TM,
there. To be evaluated there, you must cerning issues with pregnancy and
ADEM, and NMO. Transverse Mye-
make a request. After I managed to do childbirth. We have decided our
litis, Acute Disseminated Encepahlo-
so, I was assigned to a physician there. goal is to develop a written source of
myelitis, and Neuromyelitis Optica are
Being evaluated by the physician at information that would address is-
not contradictions to becoming preg-
the Transverse Myelitis Center was sues faced by women with rare
nant. There are definitely risks in-
such a profoundly informative and neuroimmunologic disorders during
volved, but these can be managed.
uplifting experience. Finally, someone pregnancy and childbirth. It is also
Careful evaluation by your obstetrician
knew about what was really going on our hope to offer support and infor-
and your neurologist can help identify
with me. He knew everything about mation through the TMA website
potential challenges and how best to
Transverse Myelitis; the damage to the and, in the future, to be able to ex-
deal with them.
spinal cord, the symptoms, the healing pand our efforts to include support
process, the chances of this being the for many other women’s health is-
The information is available in the
first attack of another neurologic dis- sues.
form of a brochure, which can be ac-
ease, and the depression. He had a
cessed and printed from your home
plan for follow up, so as not to miss In addition, I have enlisted the sup-
computer in pdf format.
any further disease processes. He sup- port of a high-risk OB
ported the treatment of my depression. (perinatologist), with whom I work,
The brochure addresses many impor-
Most importantly, he was willing to to contribute to this effort. In order
tant issues, including:
listen and be available for any ques- to gain a better understanding of spe-
tions or concerns. By giving me infor- cific issues, I am asking for TM pa-
Conception issues, including fertility
mation and support, he helped me start tients who have experienced preg-
concerns and risk of miscarriage.
to get a sense of control back in my nancy and childbirth to consider
life. sharing their personal experiences Concerns regarding genetic links to
regarding chronic urinary tract infec- TM, ADEM and NMO.
After several months of physical ther- tions, mobility problems, preterm
apy, I returned to my job as a Labor labor, medication use during preg- Preconception counseling and selec-
and Delivery Nurse. At first I worked nancy, labor experiences/ tion of the proper health care provider,
Page 66 The Transverse Myelitis Association
i.e., perinatologist vs. general obstetri- Kimm Auxier daunting task of raising a new baby
cian vs. certified nurse midwife. and raising myself out of bed. I did
As I sit down to write this article, I get through it and my TM comes and
Medication use prior to conception,
am swarmed with the myriad of emo- goes. I am always amazed by the
during pregnancy, and postpartum.
tions that overcame me during my power I feel in strong legs, strong
Potential complications during preg- pregnancy with my fourth child. I body and strong mind. I know that my
nancy, such as mobility problems, was sitting in a chair reading the in- TM has been a blessing for me. That
deep vein thrombosis (blood clots), formation packet that Holt (an adop- may sound strange to many of you, but
urinary tract infections, constipation, tion agency) had sent me in the mail it has taught me to rejoice in the
anemia (low blood count), and preterm when I realized that I was unusually healthy body I currently am experienc-
labor. Details on how these complica- tired, had missed my cycle and was ing.
tions may be managed. experiencing all the things that go
along with being pregnant. I remem- If any of you are currently thinking
Hormonal changes during pregnancy about getting pregnant, are pregnant or
and their impact on TM, ADEM, and ber taking a pregnancy test and look-
ing at the results totally stunned. have new babies and are struggling,
NMO. please know that I am just one person
That was six years ago, and of
An explanation of Autonomic Dysre- course, I would not change any of it telling her story, and I am here to tell
flexia, a potentially life threatening for the world. G-d truly knew what a you that TM will always create ups
complication which can occur during beautiful plan He had in store for our and downs in your lives, but the ex-
labor. The known triggers of Auto- family. citement that you can personally create
nomic Dysreflexia and how it can be in your own lives is well worth the
prevented and treated. My TM had actually gone into what I everyday struggle. Be strong because
refer to as the “dormant stage.” I no matter where you are, you are
Pregnancy Induced Hypertension vs. touching people in a positive way with
Autonomic Dysreflexia. Why it is tried extremely hard to focus on the
positive and enjoy the moments. I your TM!
critical to know the difference.
felt fantastic! My legs were not like
The labor and delivery process for noodles, my neuropathy was gone Sharon M. Holmes
women with TM, ADEM, and NMO. and the fatigue that comes with TM Mother of two
was gone. I truly had no symptoms T-7 Complete
The safety of epidural and spinal anes-
whatsoever. I feel compelled to say Transverse Myelitis
thesia for women with TM, ADEM,
that maybe my case was extremely Astoria, NY
and NMO.
unusual, but the child that you create
Choosing which type of medical facil- is such a spectacular gift that I truly The day I found out I was pregnant I
ity will provide the best care for believe it is well worth the risk. My forgot about everything else and gig-
women with TM, ADEM, and NMO network of support was also some- gled my butt off. It had only been sev-
during labor and delivery. thing that I had and without my fam- enteen months since I was diagnosed
ily and friends it would have been a with acute TM. TM left me very much
Postpartum issues, such as bladder myself; just shorter. After the initial
trying time.
distention and constipation. shock began to wear off, I began to
Breastfeeding options. During the delivery of Elijah, I strug- worry about how my health could af-
gled with weakness in my legs. I had fect the baby. Then, of course, I wor-
Awareness of postpartum depression delivered my third child naturally ried about myself. Had I taken on too
signs, symptoms and treatment. and wanted to experience this again. much in my newly seated position?
Coordination of care between multiple My body had other things in mind.
I was monitored very closely. I was
healthcare providers. So, I ended up in the bed, epidural
also stuck in the hospital for a month
and smiles. Five hours later, a baby
and a half on the labor and delivery
You can access both a text version and boy, tears of happiness and no
floor battling one bulldog of a UTI.
a pdf version of the brochure from the memories of TM.
The doctor was concerned that if the
following link: infection became too severe, it could
www.myelitis.org/obstetrics.htm Within six weeks of my delivery, my
cause premature labor.
weakness started to creep in and the
TM fatigue rolled over me. For the The rest of my pregnancy went off
next month, I struggled with the without a hitch except for one thing.
The Transverse Myelitis Association Page 67
Sadly, those little flutters and resound- My Experience with TM discovered that my appendix had rup-
ing karate kicks of pregnancy were tured during the C-section. I was fairly
eerily absent. I slept with my hands on and Pregnancy ill for awhile after delivery and ran
my stomach every night. Only then Cossy Hough fevers on and off for a couple of
did I feel my son move. I did receive weeks. Normally, this would have
some very interesting stares from peo- One of my first questions when I was made my TM symptoms go crazy, but
ple who watched me nonchalantly roll diagnosed with TM in January of it didn’t.
through the hospital corridors quite 2000 was, “how will this affect my
obviously pregnant. Only very few ability to have a baby?” I have This is my report at six months post-
would ask me what had happened to wanted to have a child my entire life. partum. I have been through illness,
me and I would simply respond, I couldn’t imagine not having a fam- sleep deprivation and a ton of stress.
“Nothing; I’m just here to see the ob- ily. My TM symptoms are much The only symptoms I’ve had, though,
stetrician.” And with a polite nod, I’d more mild than a lot of people with have been some toe numbness and that
go on my merry way. TM. I could walk again with a cane nagging hip pain. I haven’t used any
within a couple weeks of being diag- adaptive equipment since my last tri-
On February 17th I had my regularly nosed. I have had periods when I mester of pregnancy. I try and take
scheduled prenatal appointment. I was cannot walk due to weakness after an good care of myself. I don’t push it. I
going to cancel, but at the last minute illness or when I get too tired and I try not to get too hot and rest when I
chose not to. Good thing, because it developed some fairly severe hip need to. I avoid illness as best I can.
only took minutes for the doctor to pain after a couple years of having
deduce that I was in active labor! Go TM. Otherwise, I do fairly well. For a long time, I tried to not even talk
figure, without even so much as a about the improvement in my symp-
twinge; I was already half way to giv- Even with my strong desire to have a toms for fear of changing my luck.
ing birth! At five centimeters, I was child, it took my husband and I a few Now, I am cautiously hopeful that
whisked once again to labor and deliv- years of questions and research be- there has been a change, and that my
ery. While the echoes of laboring fore we were comfortable with the TM symptoms aren’t as prone to flare
women filled the halls, I sat peacefully idea. Would my TM symptoms get up to various stimuli. I know only time
watching the machines, waiting for worse? When I was having trouble will tell. I have become quite supersti-
them to tell me I was having a contrac- with my symptoms and not able to tious and am knocking on wood even
tion. This was very not like the, lets walk, how would we care for the as I write this.
call it, “discomfort of giving birth” to baby? Was TM a genetic disorder
my now twelve year old daughter, that I could pass on? Once we had Of course, I got the absolute best luck
Kristin. That evening at 11:42 and enough information, we decided to in the end; a gorgeous, healthy, sweet
with the help of forceps, I gave birth to try and get pregnant. I have to admit, daughter named Lily. I am thankful to
a healthy baby boy we named Michael. I was still a little scared, but we felt her for bringing so much joy and fun
as prepared as we could be. in my life. My husband and I have
Presently, with my now teenage
decided to stop with one child, not
daughter and my twenty month old
My TM symptoms were quite persis- wanting to press our luck and wanting
son, I have no time to worry about my-
tent during my first two trimesters. I to make sure we can give Lily all the
self. That, in itself, has been my sav-
was exhausted and had nasty morn- energy she deserves. It was a thought-
ing grace. I’ve learned that my dis-
ing sickness and a lot of trouble with ful and weighted decision for us to go
ability presents certain special prob-
weakness and numbness. It seemed ahead and have a family. It required
lems, but none of which could ever
to get worse and worse. I was on the some creative thinking and flexibility.
hinder my love for my children or their
cane and walker a lot. Then, in my It required an amazing support system
love for me. To my daughter, I’m still
third trimester, my symptoms vastly and a husband who never falters in his
mom; I’m just shorter. To my son,
improved. I went through the dura- dedication to our little girl or me. And
well, I’m just mom. Yeah, it is hard
tion of the pregnancy with no signifi- it was the best decision we’ve ever
not being able to pick up my son with
cant weakness at all. made.
my level of injury, but once I have my
children in my arms, everything else is
My delivery was a small nightmare. Dedicated to my little miracle, “Lily
less important. And all my little man’s
Our baby was born a month early by Jessica Carroll, 3/31/05”
gotta say is vroom vroom and this
chair becomes a racecar that chauf- emergency C-section after I spent a
feurs him from room to room. few days in abdominal pain. It was
Page 68 The Transverse Myelitis Association
A Blessed Pregnancy the baby. ready prepared mentally for the C-
section, but when I realized that G-d
Yvonne Lugo I found out I was pregnant two days had given me the opportunity to have
Puerto Rico after my sister found out that she was this baby the way I wanted it, I real-
also expecting a baby. The news of ized that He has been with me every
Carlos Aniel is my son’s name. He my pregnancy was overwhelming for step of the way in my journey through
represents a dream come true and one everyone who knew me. After such life.
of my two biggest achievements; the a long time and with so many people
other is to be able to walk again after thinking that it might never happen My son was born on Friday, Septem-
TM. for me, I was going to have a baby. ber 26th of 2003 at 1:45 am. He
My first obstetrician predicted a ce- weighed 7 pounds and 3 ounces and
I remember when I was in high school, sarean even before I was pregnant. I his length was 21 inches. I started the
I bought a pair of boy’s sneakers, be- changed to an obstetrician who un- contractions at home and three and a
cause I always wanted to have a baby derstood my need to try to have my half hours later at the hospital, I had
boy. Then, a few years later, TM hap- baby without judging me by my my baby via natural birth. Although it
pened. It was a big struggle at the age medical history and my hip replace- was difficult to push, because of the
of twenty to learn to walk again, to be ments. spasticity I have in the pelvic floor, the
self sufficient and to know my body doctor’s intervention was of great
and my physical limitations. The big The pregnancy was a wonderful and help. I also had the wonderful support
question for me was whether I would blessed experience. I felt great physi- of my mother and my husband who
be able to have children. As a secon- cally and spiritually and everything were present at the birth. I have been
dary effect of the cortisone, I devel- developed smoothly the whole ten so blessed to be able to breastfeed my
oped avascular necrosis in both hips months. Unfortunately, during the baby for ten months and to even
and had two hip replacements. A few early stages, I was very disappointed breastfeed my nephew who is 16 days
months after the surgeries, I developed to learn that I had placenta previa older than my son.
epilepsy (seizures). and the C-section was the option.
During the pregnancy, the doctors I now have ahead of me the biggest
At the time I got TM, I was an aunt of became concerned about urinary tract task yet; to be the best mother possi-
three wonderful nieces and two very infections, because my neurogenic ble. Everyday, I strive to reach that
active nephews. One day, one of the bladder was not emptying much. goal. I am sure that with G-d guiding
boys threw a ball into the street and They decided to give me medications me, I will do my best. Since TM, I
ran after it. I wanted to run as fast as I to avoid the infections. I only took have learned to never give up on our
could to save him from the traffic. All the medicines for a month, because dreams. With hope, faith and determi-
I could do was scream, “No, don’t go something inside me made me feel so nation, from the bottom of our hearts,
into the street.” Although nothing certain that everything was fine. For dreams can come true.
happened to my nephew, at that mo- the entire ten months, I never had an
ment, I realized that my body didn’t infection. G-d bless you all,
responded to my intentions. That feel- Yvonne Lugo, a happy mother
ing of being helpless made me scared, Also, I had two mild seizures and my
but it also made my conviction of be-
ing a mother stronger than ever. I
neurologist wanted me to take a Kim Ross
medication that was different from [email protected]
knew that I would have to work hard. what my gynecologist wanted me to New York
take. So, I decided to use none.
I started doing cardiovascular exer- Again, I had this overwhelming feel-
cises and lifting lightweights at home. I got TM in March 2004 when my
ing that I was in the perfect hands, daughter Courtney was six months old
Immediately, I noticed a change in the G-d’s hands. I was seizure-free dur-
strength of my limbs. With time, I had and I was approaching my 38th birth-
ing the remaining time. day. Throughout that winter I had
not only gained my physical strength,
but mentally I was much more fo- many bouts with flu and cold, culmi-
When I went to the last check up to nating in a bronchial infection that
cused. I felt as good as I had felt since make the arrangements for the C-
getting TM. Also, my seizures where would not let go. I went to my doctor
section, miraculously the placenta for some antibiotics and a day after I
controlled and I stopped using medica- had moved and the baby was in the
tion. I felt at this point in time that my started taking them, the TM hit. I did-
right position for natural birth. I had n’t know what it was then, just that I
body, mind and soul were ready for mixed emotions, because I had al-
The Transverse Myelitis Association Page 69
woke up one morning and couldn’t ing what has happened would require other tests to determine whether our
feel anything in my legs. It started more time and space than we have child would be born healthy. We dis-
with a foot and then moved upwards here. Though there are still days cussed the pregnancy with everyone
and stopped at my waist over several where getting out of bed is a chal- we could, medically and neurologi-
days. I became weak and it got harder lenge not to be ignored, I am fortu- cally. They could find no reason that I
for me to stand and walk. I started nate to have a wonderful support sys- could not have a healthy pregnancy in
falling down and loosing control of the tem to help me through the rough spite of my limitations. So, things pro-
function of my legs as the numbness patches and keep my outlook posi- gressed.
and heaviness got worse and worse. I tive. I know I couldn’t manage with-
was diagnosed with a lesion at T12 out my husband and also the wonder- The first trimester was difficult.
about one month after the onset of ful people who help me care for my Along with the morning sickness and
symptoms. two year old. These are the people fatigue that comes with a normal preg-
who make it easy for me to get the nancy, I had to deal with a lot of pain
It took many months before I could rest I need to be at my post TM and sensory issues that still remain
walk relatively normally again. Dur- “best.” Recovery has been a strug- from the initial TM attack. The fa-
ing that time I did a lot of crawling gle. I no longer have my career as a tigue, that many of us know so well,
around my house with my small baby heating and air conditioning me- was disabling. There was no medical
and scooting on my butt down the chanic due to the ongoing deficits. I relief for me. The available drugs
stairs, because I had fallen so many tried about nine months into recovery never worked very well for me and I
times and was afraid of dropping my to go to work about four hours a day wasn’t about to try something new
child. I broke my foot a few months at a much more sedentary job, and during the pregnancy. I just toughed it
into the TM by falling down the stairs, after struggling daily with the wors- out the best I could.
because I couldn’t feel them beneath ening of symptoms and viral illness
my feet. In a way that was a blessing, after viral illness, I was unable to At around 20 weeks, we found out
because it prompted me to get physio- continue to work. from the amnio results that we were
therapy and that improved the function going to have a healthy baby girl. The
of my legs tremendously. Today, I can About a year into TM, I became good news about the amnio was that I
walk, albeit not far. As long as I get pregnant again. This was by acci- couldn’t feel the needle, so it was not
lots of rest, don’t get too hot or cold, dent, not by design. My husband and painful at all to have done. Just about
don’t get any viral illness or find my I had decided right around this time at the beginning of the second trimes-
immune system compromised in any that we would not be having any ter, I got an unexpected gift of pain
way, I am able to function not too more children. No one could tell us relief. I am not sure why this hap-
badly. whether there were risks with TM. pened, but it sure made life a little eas-
No one could reassure us that we ier to deal with for a time and for that I
The drugs that were prescribed never could have a successful pregnancy, was grateful. My OB has no experi-
really worked for me. That is, some of so we decided that we wouldn’t take ence with TM, but said that this is
them helped the original complaint but that chance. Shortly after making a common with MS patients and many
not without side effects that were more well-researched and questioned deci- other autoimmune diseases with which
unbearable, so I have mostly relied on sion not to get pregnant, we found she has greater familiarity.
other methods to gain quality of life. I out that we already were. We told
did several months of aquatic therapy very few people and went directly to During the pregnancy, fatigue has
and I have physical therapy once a the neurologist and obstetrician to been my constant companion. I have a
week even now. Things have been up find out if this was safe. I still had a lot of fatigue with my TM and with the
and down with the pain and residual lot of residual symptoms that I was addition of pregnancy to the mix it has
symptoms, but the key seems to be dealing with from my TM attack at made the fatigue much worse.
taking good care of my immune sys- T12. My pregnancy before TM had
tem, no sudden changes of body tem- its own issues with a two vessel cord If I hadn’t had a pregnancy before I
perature and lots and lots of sleep. and minor heart and kidney defects got TM, I might have had a different
for my daughter, as well as high perspective, but the hardest part of this
That is a fairly simplistic explanation blood pressure for me. So it seemed pregnancy has been not being able to
of what goes on in my life on a daily prudent to seek this guidance. feel the movement of the baby in the
basis, and as you all well know, this is way that I had with my daughter. It
not a simple affliction. It has changed We had an amniocentesis, a detailed was hard for me initially and I found
my life in so many ways that describ- anatomical ultrasound, and some myself having a lot of anxiety about
Page 70 The Transverse Myelitis Association
whether the baby was ok. I just didn’t even a cold, my residual symptoms after this pregnancy? I try to override
feel the movement like I did with are amplified to the point where, at these concerns with positive thoughts.
Courtney. As the pregnancy pro- times, I have thought I was having a
gressed, I could see the baby move. recurrence. I am very sensitive to My daughter, Courtney, is a beautiful,
Later on I could feel the baby move as taking care of myself as much as well adjusted two year old who is in-
the movements became more pro- possible. dependent and articulate for her age
nounced, but I missed the fluttering I and has flourished either in spite of or
felt in my first pregnancy and the I am nervous about what is to come. because of what I am not able to do for
sense of connection it brought. My I am scheduled for a C-section with a her. She knows no different than a
morning sickness, or should I say general anesthetic on December 14th mommy with some physical limita-
morning, noon and night sickness, and I have maybe more than the nor- tions and so she does not expect me to
stayed for much of the pregnancy. mal fears associated with the care of do things I am not able to do. This
Even as I am writing this in my 29th a newborn. I know how little sleep I child will be the same. She has com-
week of pregnancy, I still experience had when Courtney was born and I passion for people who are hurting,
the nausea, though not as extreme as I know how much sleep I need just to well beyond her years in this regard.
had during the initial stage of preg- walk like a normal person. I am not
nancy. That is a normal part of preg- sure how the two will reconcile Just like parents without any health
nancy, and I feel certain that TM has themselves. Courtney is going to issues to contend with, we are worried
nothing to do with this. daycare and I will continue to take about the safe arrival of our baby. I
her in the hopes that I can manage to had a C-section with Courtney and so
I have recently found an increase in give this baby the same beginning I this was not even something I ques-
my pain again and banding in the mid- gave Courtney. I know I will need tioned in this pregnancy. I am choos-
section. Possibly, the holiday I had in more help than ever to manage the ing a general anesthetic, because I feel
the second trimester is over, but I am needs of this baby and I am lucky to that I do not want the risk of a spinal
grateful for it, none the less. I know have an understanding husband and anesthetic. There is not enough con-
this will sound strange, but this post family. clusive data to say it is safe to have a
TM pregnancy has been a much spinal, so I will not take that risk. I am
healthier one in spite of my limita- I longed for a second child, but I having a second ultrasound next week
tions. With my first daughter, I gained thought I wouldn’t be able to handle to take another look, but the obstetri-
almost 60 pounds and suffered from another pregnancy and TM. I feel as cian feels confident we are having a
high blood pressure from around the though this has happened for a rea- healthy baby girl. Although I didn’t
end of the 5th month. This time I have son. It may be an irrational thought, make the choice to get pregnant inten-
gained very little weight, and although but somehow I feel as though this is tionally, I am so thrilled to be giving
I am experiencing the high blood pres- part of my recovery. I go to a Chi- Courtney a sister to grow up with. I
sure, it has not been nearly as high and nese medicine doctor, a young mod- am glad the decision was taken out of
came on just in the past couple of ern guy who is a doctor of acupunc- our hands.
weeks. With this baby I am much ture and chiropractic for treatment
more conscious of what I eat and how each week. He says that the Chinese The message I would like to communi-
I take care of myself. The invincibility believe that illness is something that cate to those of you who might be
factor is forever gone for me. I know comes full circle; that pregnancy is a thinking about having a baby with TM
what can happen to me now and I healing time for the body. Since I and reading my story is this: if you
make better choices in my life. I know got this after my first child was born, want a child, don’t let this illness stand
I didn’t do anything to cause my TM, perhaps it is possible to recover or in your way. Take the proper precau-
but my mindset now is that I want to improve with a second. I don’t know tions for your age and condition and
know that I have done everything in if he is right, but I will take any en- don’t deprive yourself of the experi-
my power to recover and hopefully couragement I can get at the mo- ence of being a mother. Children are
prevent a recurrence. My doctor ment. I have the normal fears about our greatest gift and the most impor-
seems to feel that the highest incidence being a mom, even though it is my tant job I have is caring for Courtney
of recurrence would be in the first six second child. Will I be able to do and soon, her new sister. Even if I am
months after giving birth. So, I have this? Will I be a good mom? Every- not able to do everything that I would
been very conscious of taking care of one has those thoughts. I also have like for them physically, I still have so
my general health during this preg- fears about the TM. Will I have a much to offer them as a mother. I am
nancy and have generally done so recurrence; is this first attack a pre- happy to be having another child so
since I got TM. I know that if I get cursor to MS; will it declare itself that Courtney has someone to be close
The Transverse Myelitis Association Page 71
to as she grows up like I was with my As it was the Sabbath, I tried to wait and has to learn to walk from scratch.
sisters. until that evening to deal with it. By I got out of the same car I’d gotten out
late afternoon, I could no longer con- of a hundred times before only, now
I used to feel guilty about Courtney tain my anxiety. Later, I spent that with wobbly, numb “sea legs.” It is
going to daycare as I don’t work, but night at the emergency room baffling one thing to be needy in a hospital set-
they can give her something I can’t the doctors on shift. ting where there is such an obvious
which is physical play. Also, having connection to sickness, debilitation,
her there gives me the time I need to Over the weekend I was diagnosed (excluding giving birth); why else
battle the fatigue so that when she is relatively quickly. In retrospect, I would one be there. It is an entirely
home with me, I can care for her in a believe the quick diagnosis was due different matter to be needy back in
more complete way. I eventually real- solely to serendipity. We were visit- one’s own personal environment. Like
ized that my job right now is to make ing Baltimore for the weekend and I a litmus test in a chemistry experi-
sure that I am at my most functional, ended up at a county hospital a mere ment, now I was back on my home
rather than going to work. Having few miles from Johns Hopkins. turf. We were back from our trip to
children is something I wouldn’t trade Those were a few surreal and fright- Baltimore and immediately the
for anything. TM has taken a lot of ening days at that county hospital. I changes surfaced glaringly. Discover-
time from me and probably more to remember waiting for my MRI to ing new inadequacies daily saddened
come, but I am glad it hasn’t taken this come back praying that it wasn’t a and frightened us both.
experience from me. brain tumor. Silly as it may sound, I
remember making it okay in my Having faced and overcome certain
On a final note, I just want to say that mind; I cleaved to my notion of G-d challenges in my childhood, I honestly
the TMA website has been a great help and willed the situation to be okay, believed in my heart of hearts that I
and support for me. Everyone has including the idea of leaving my was equipped to deal with this new
been so kind and helpful with informa- young children motherless. Needless life. That week back at home in New
tion and just good wishes. So, thank to say, I passed some of the worst York, before going to Kessler for reha-
you, everyone, for your support. We moments of my life in that room. bilitation, was difficult. Though peo-
all have our challenges to face with Luckily, those tests came back nega- ple close to me tried, I felt like I was in
this condition and sharing this has cre- tive. Unspeakably grateful, my no man’s land; an in-between stop-
ated an undeniable bond. We are the deepest fears were not confirmed. over where no one was around to help
only ones who truly understand each me make sense of this odd thing that
others’ triumphs and challenges. We left Baltimore and drove back to had happened. It was so profoundly
New York with an odd, never before painful for me that I haven’t thought of
Harriet Schlacht heard of (by myself) diagnosis and a it since being asked to write this piece.
New York strange new reality. For the first
time in days I was away from hospi- I remember this: it is the middle of the
Stories come from any number of tal personnel – namely, nurses and afternoon and I’m lying on the carpet
situations in a person’s life. The good neurologists. As we drove continu- on the living room floor. It is a room
ones tend to revolve around one par- ously up the New Jersey turnpike, I with a high ceiling with a sunken liv-
ticular moment that shatters our view remember watching the pinks and ing room, a pre-war building. The kids
of life. That moment of mine was on a purples in the sky grow increasingly are in school and it is utterly quiet; a
Saturday morning a little over three dim as it became dark. As our kids rarity in which I had absolutely no dis-
years ago. I woke up with TM. Half quieted down, my husband and I traction, nothing to attend to. For
asleep, I went to use the bathroom at 6 were speechless. We tried to make those of you with little ones, you un-
am. I remember feeling a little tingly, sense of what had turned a perfectly derstand, this is usually amongst one’s
a little odd, but thought I’d just been innocent weekend into some un- most blessed moments when the heav-
sleeping funny, maybe on my side. I known nightmare. Most of all we ens open up. I finally, thankfully, feel
didn’t give it too much thought. Two wondered what lay ahead. We did more curious than scared. Quietly, I
hours later, I woke up and realized that most of this quietly in our minds. try to assess the sensations of my
not only could I not feel my left side lower body. I realize that the surface
from the breast down, but that I liter- Once we reached the driveway, I sensation along my left side is dimin-
ally could not get up on my feet and opened the car door and tried to pull ished. I can’t quite feel it the way I can
walk without holding on to furniture myself out. I had this creepy memory when I touch my right side. All alone,
for support. I thought I’d had a stroke. of Ariel, the Disney character, a mer- I remember watching the sun stream-
maid who, as an adult, acquires legs ing in the tall window witnessing quite
Page 72 The Transverse Myelitis Association
a beautiful, quiet moment, and admit- tight, as if they are thoroughly cramps, never mind the major time
ting to myself that I felt completely wrapped with bandages from toe to inconvenience and pain they cause. So
horrified and betrayed by my body. It calf. But to my delight, they move I started experimenting with oral medi-
is a surreal feeling. I touched my body well in the water and with Vitamin B cations. I had taken Miralax and then
without the feedback that my body shots, I have enough energy for only upon running out of my supply, I
part is being fully touched. In natural swimming laps. I’ve accepted feel- looked to my doctor to fill the pre-
denial, I began to believe that if I did ing useless afterwards, as the water scription. “I hope you’re not preg-
all sorts of deep calinetics exercises, I seems to knock the wind out of me. nant,” she commented. “Well, in fact I
could wake up my nerves, force them As I adapted to my new body, I real- am,” I answered. “Well, H, you
to feel. Looking for limits, I pushed ized that my mind seemed preoccu- should be aware that there are no stud-
my body very hard. No doubt, I had pied with the damaged side. I re- ies that show that Mirilax is safe, at the
trouble doing many of the exercises I member a line in a song by Paul very least.” Naturally, I spent the rest
had previously mastered. I did, how- Simon “…don’t ignore the obvious of the pregnancy obsessing. I finally
ever, find that nugget of truth in my child.” I forced myself to recognize got the appointment with the gastroen-
body that I was desperate to find; I that there is still part of me that terologist who I had been waiting to
learned that I CAN feel deep muscle DOES work. Focusing on my nega- see for months. He recommended
pain, that the diminished sensations lie tive is not a correct view as it is not CITRUCEL, which I highly recom-
primarily on the skin’s surface and on the whole picture. I did a lot of cog- mend for pregnant and non-pregnant
the soles of my feet where it is patchy nitive restructuring during the year women. I can’t believe how easy it
alternating with hypersensitive areas. following. was compared to the other necessary
choices. Since then, I have been taper-
My depressed feelings gave way to While in Kessler I had plenty of time ing it down to nothing. I now take
deep philosophical questions about the to think. One of the thoughts that nothing for this function. I do think
sense of a fragmented self. I found a came to mind was my inner voice that juicing with raw vegetables and
great area of psychology which really saying, “But Harriet what about a fruits (“Greens for Life”, by Victoria
spoke to me. A woman, Judy Dunlop, third (baby)?” I have always wanted Boutenko) is a good place to start, es-
a woman with MS, crossed my path. to have more than two children, be- pecially if pregnant women prefer to
She taught a class on ing one of four children myself. I try natural remedies first.
“Psychosynthesis.” became pregnant only three months
after TM struck. My neurologist told Now, for each woman with TM, her
Back from Kessler rehabilitation, my me that there was no risk involved, pregnancy will certainly raise different
responsibilities as a stay-at-home but I learned quite quickly that it was issues and challenges. The banding in
mother to two toddlers resumed. I was going to be a challenge. I was sleepy my legs, as I mentioned earlier, was
so lethargic during that time I had to for most of the pregnancy and as the maddening and incapacitating. The
rest almost twice a day. I needed a lot weight came on, the banding sensa- fatigue was extremely debilitating and
of household help at the time. Thanks tion in my feet became unbelievably the worries over what my drugs did to
to my parents, I got it. As the months unbearable. I used to speed walk as my baby were heavy. But another
passed, I grew curious and continued a hobby. From my second trimester feeling would arise from very deep
testing myself. I remember the first on, even wobbly, I could not walk inside. I felt in my gut that what I was
few times back at the gym, in the pool, even one block to get milk from the doing (growing a child while my body
at a strength training class. I used to nearby shops. I took the car, liter- had TM) was Herculean. I remember
love to speed walk outside; now I had ally, everywhere. feeling like Rocky Balboa climbing
to struggle to do five leg lifts. There the steps to that Philadelphia monu-
were times I cried quietly in the back The other issue where TM and preg- ment as he was training for his first
of the strength training class. I felt nancy intersected was with bowel boxing match. As most women will
very humbled. I wanted people to give movements. My TM body had trou- do in any particularly trying preg-
me a break and not look at me with ble having BM’s on my own from nancy, I raised myself up to the chal-
prior expectations. I learned to stay in that first morning with it in Balti- lenge. I wanted so badly to partake
my reality, not to ignore others, but to more. As such, I was experimenting once again in the privilege of bringing
stay with my new reality without with suppositories, as well as enemas another soul into the world. I felt my-
shame or apology. I realized, happily, for months. In my third month or so, self on a mission and those of my
that I could still do laps even though it finally dawned on me that with a friends who are the more verbal types,
the legs I was using to kick with didn’t baby growing inside, it might not be (a prerequisite for being pregnant with
feel the same. My lower legs feel quite such a smart thing to be simulating TM by the way), recognized this and
The Transverse Myelitis Association Page 73
supported me in this view of my deci- never completely understand how Getting TM, while not a choice on any
sion. I cried often. I cried much more much of a miracle his life is, but I of our parts, and then carrying a baby,
during this pregnancy than during my know it, and those who were close to which is most definitely a choice, with
previous ones. I think that depression me during this pregnancy might re- it has given me much more than it has
might be studied in pregnant women call it to him years to come. taken out of me. I like to believe that I
with TM as it feels that there is much now harbor added sensitivity that just
to be depressed about with limitations I wanted it to be a natural birth, but was not there beforehand. All that and
growing by the day. One piece of ad- was doubtful as to whether or not my another child to boot. Not such a bad
vice my sister would give to me re- body would cooperate in the final deal really.
peatedly, was to count down to the moments/hours. I opted for a
end; sometimes she would make me ‘spinal’ since I’d had a bad experi-
mark off on the calendar each day that ence with an epidural in a previous
went by as a real accomplishment. labor. When I was told to push,
though I did not feel myself pushing,
An inner doubt stirred deep during the the baby, surprisingly, came out. My
pregnancy which had to do with me, first baby was born c-section. As
not the baby and that is the question, such, I knew the ‘worst case sce- The Transverse Myelitis
would my body be weakened perma- nario’ going in and was ready for this
nently from the pregnancy, would my possibility; but it turned out that Association
chances for recovering areas of feeling there was no need.
be compromised? In a nutshell, was The membership of The Transverse
this a very bad time to have this baby? Lastly, a few words on TM in gen- Myelitis Association includes persons
I will say this, how much recovery eral. I have learned to accept the with the rare neuroimmunologic disor-
could I have had, had I not put the weirdness, not fight it. I think about ders of the central nervous system,
wear and tear on my body, I will never it mostly in terms of how to deal with their family members and caregivers
know. I do know that I have recovered my symptoms more effectively. and the medical professionals who
quite a lot; I have healed to a decent More comfortable shoes to buy, treat people with these disorders. The
extent. And I am grateful. Now I am heated slippers, a better brand of Transverse Myelitis Association was
like a normal person with a fascination wool socks (winter is a hard time for established in 1994 as an organization
for comfortable, stylish shoes. I take people with TM, probably across the dedicated to advocacy for those who
certain things very seriously, i.e., B board). I’ve learned that it is what it have these disorders.
shots, shoes, energy issues, drinking is. I don’t need to nurse my wound.
raw greens. Regarding shoes; choosing In fact, I don’t feel my situation wor- The TMA was incorporated on No-
shoes feels so very intimate. I need to thy of drama most of the time. Only vember 25, 1996 in the state of Wash-
pass through such scrutiny before I hormones during pregnancy can play ington and became a 501(c)(3) organi-
commit to it. I imagine how it would havoc here. zation on December 9, 1996. The
feel going down hills (high pressure) TMA has more than 5,900 members
with them. I wonder if they’ll stretch I had met, for lack of a better word, from every state in the United States
by the fifth metatarsal region and how tremendous people on the Transverse and from more than 80 countries
much. It is very uncomfortable to Myelitis Internet Club; people who I around the world. There are no mem-
wear most anything other than sneak- could relate to, who inspired me, bership fees. The TMA is registered
ers, and then, I would not exactly call who calmed my spirit like no other with the California Department of Jus-
my sneakers comfortable. well-intentioned people could, try as tice, the Maryland Secretary of State,
they did. I owe the recovery of soul the Ohio Attorney General’s Office,
This pregnancy was one of the most in no small part to the many indi- and the Washington Secretary of State.
miserable times in my life (no thanks viduals who gave of their time to The TMA has also been registered
to the massive amounts of hormones at write to me and to listen to my with the National Organization of Rare
work during this time as those who thoughts. I cannot think of this pe- Disorders since 1994.
have been pregnant before know). As riod in my recovery without thinking
utterly miserably hormonal as I was, of them. They rooted for and encour-
that’s equally how worthwhile I see aged me. I felt strong and proud of
the endeavor. Aaron is now a toddler. my decision. That is, when I wasn’t
When he isn’t having a tantrum, he off in search of my insatiable craving
makes me smile. He probably will for sushi (vegetable only!).
Page 74 The Transverse Myelitis Association

In Their Own Words ond time. I remember him asking my

wife to drive the vehicle since the
medication would cause drowsiness.
In each issue of the Journal, we will bring you a column that presents the At 12pm that night, I went back to the
experiences of our members. Their stories are presented In Their Own hospital for the third time. By then the
Words by way of letters they have sent us. We are most appreciative of pain was excruciating. Once again I
their willingness to share their very personal stories. It is our hope that encountered the same physician. He
through the sharing of these experiences, we will all learn something about admitted me to the hospital and de-
each other and about ourselves. It is our hope that the stories will help us cided to put me into traction. He still
all realize that we are not alone. It is important to bear in mind that all ran no tests, scans or anything else.
newsletters and journals are archived on our web site. Should someone do
an internet search of your name, your article is likely to be identified in Early on Sunday 13 January 2002, I
their search results. You may submit your stories by sending them either was visited by a physician that was
by e-mail or through the postal service to Sandy Siegel. Please be sure to sent to me by the emergency unit doc-
clearly state that The Transverse Myelitis Association has your permission tor of the previous night. He came by
to publish your article. for a second time that day. He took
the traction off. At 10am that morn-
ing, I felt that my bladder was full. I
Basil Boy five years between 1997 and 2001, I
went to the bathroom but the urine did
Welkom South Africa participated in the world famous
Comrades Marathon between Pieter- not take its natural path as I expected it
maritzburg and Durban. to; it didn’t come out. My legs felt
It took me very long to actually write weak. I went to lie down and thought
my story – from the onset of my TM to that the traction I was in caused my
five years later; where I am today. I Then Transverse Myelitis struck me
down and still affects me today… legs to feel so weird. At 12am my
am sharing this journey with all the bladder felt so full that I thought it was
readers from where I have lived all my going to burst. I got off the bed to visit
life, in South Africa. On the night of 9 January 2002, I
woke up with severe back ache… the bathroom. I walked three steps
such pain have I never experienced and then I fell. My wife helped me up
I was born an ordinary, white, Afri- from the floor. She put me back into
kaans boy in a town called East Lon- before. On 10 January I went to see a
physician who admitted me into the bed.
don. Later we moved to a relatively
small town, Welkom. At the age of hospital. By the time I was on intra-
venous treatment, the pain had disap- That was the last time ever that I could
fifteen things went wrong and I was walk….
instructed to leave my parents’ house. peared. I was discharged on 12 Janu-
I fled to a friend’s home and his par- ary. I asked the physician what the
cause of the back ache was and if I Everybody struggled to get the physi-
ents accepted me as a part of their cian back to see me. Only at 5pm that
family and allowed me to stay with could continue exercising. He said
that I should rather rest as I had a afternoon, he came to see me. By that
them. Later on his parents got di- time I thought I was busy dying of the
vorced. When it was time, I went to muscle spasm in my lower back. I
went home and later on that day I excruciating pain in my lower back.
the army (it was compulsory in those Then the physician called a neurosur-
years to join the army). I joined one of told my wife that I wasn’t feeling
well at all. I stayed in bed that whole geon to have a look at me. The neuro-
the army’s elite battalions. When I surgeon only arrived at 6.30pm. He
completed my years in the army, I day.
called for x-rays and a lumber punch.
started working. I got married and my He said that he could not see any prob-
wife is still by my side, looking after At 6pm on Saturday 12 January, the
pain returned. This time I went to the lems. He wanted a scan to be done.
me today. She had two miscarriages The scanner in that hospital was out of
before we were blessed with a beauti- emergency unit of the hospital. The
physician on duty gave me an injec- order and he said that I was going to
ful daughter. She is our only child and be sent to Bloemfontein – a town ap-
she is my princess. tion and sent me home. He did not
send me for x-rays or scans or any- proximately two hours from where I
thing else. At 9pm that same eve- had been in the hospital initially.
On the sport front, I played rugby and
participated in boxing while I was at ning, I went back to the emergency
unit. The pain was still acute. The After a long struggle, they managed to
school. After school I continued play- find an old ambulance van to transport
ing rugby till the age of 29. The next same physician injected me for a sec-
me to Bloemfontein. By that time it
The Transverse Myelitis Association Page 75
was 11pm. I arrived at 1am at the hos- but I don’t agree with the current medication they’re using for their back
pital in Bloemfontein. They contacted prescription since it is a strong pre- pains.
another physician, who lived on a farm scription and because Morphine is
outside Bloemfontein. He only arrived already a strong, scheduled 7 drug. Thank you, once again, and the best of
after another hour at the hospital. He luck with the TM-related work you are
did the scan. He told me very little To sum it all up: I worked hard at the busy with.
except that I should lie still. He said, mine for 14 years of my life. After I
“I don’t know what I am talking about was diagnosed with TM, I was of- With thanks,
and I don’t know much about TM.” fered a new job opportunity in the Basil
“bonus” department of the mine. On My mission statement in life says:
At about 3am that morning, I was the 20th of April 2005, after Harmony “Quitters don’t win and winners don’t
transported back to Welkom. I was took over the mine, the financial quit.”
helped back into my bed and still no- manager gave me a letter which said
body could tell me what was wrong I shouldn’t return to my regular job Basil Boy’s contact information is
with me. When I was lying there, it at the mine. listed in the TMA directory under
was difficult to describe what went South Africa. If you have the time to
through my mind. My head was toss- Two weeks after the mine retrenched write to him, I know that he would love
ing and turning. I can’t really describe me, the head office in Bloemfontein to hear from you!
it. On the 14th of January 2002, at contacted me to inform me about an
10am, life-changing news was given to interview they would like me to Lyles Forbes
me in my hospital bed by a few physi- have. The job opportunity that the Virginia TM survivor
cians that never introduced themselves head office had available was to help
to me. I was told that I will be a para- repair wheelchairs and to help para- I am a little over four years out from
plegic for the rest of my life and that plegics with certain resources. I got being paralyzed from T6 - T8. I have
all they can do for me is to organise the job and I’m very glad to be able wanted to pass along my story, which I
for me to enter a rehabilitation centre. to say that I’m helping handicapped consider to be a success. Following
people by repairing wheelchairs and gall bladder surgery in November,
Two weeks after I started my pro- helping with resources in the entire 2001, I suffered a number of post op
gramme there, I was discharged from Golden Arc Area of South Africa. complications that mystified me and a
one of the worst rehabilitation centres The detail of my job includes con- number of doctors at both Riverside
in South Africa. The centre was a po- structing monkey chains, wheelchair Hospital and Mary Immaculate Hospi-
litically orientated mine hospital and it carriers and other wheelchair equip- tal. When I was able to return to work,
is ironic that I had actually had to go ment, like commouts for physically three weeks after the surgery, I began
home from the rehabilitation centre to handicapped people. About a month experiencing periodic numbness in my
rehabilitate, with the help of my wife. ago, I managed to construct a break- legs. Eventually it was to be accompa-
through hydraulic winch. An elderly nied by severe pain in my abdomen,
A whole year and a half later – in Sep- man is using the winch to lift his like a rope being tightened, and cramp-
tember 2003 – I started having bladder wife into the bath and lift her out of ing in my legs. I was seeing a variety
and urination issues. The conclusion of the bath again. I charged this man of doctors in addition to my GP. The
these issues was that I required a almost a quarter of what the initial lead physician was my Rheumatolo-
urostomy bag, but I regret deciding to quote for the winch was, because I gist. I was also seeing a Neurologist. I
use one of these bags, since the urinary like doing my job for the pleasure it believe we did every test possible in
stoma pulled back into the canal and I provides me and not for the money I the lumbar area, as they suspected
experienced many infections after that. make out of it. My wife still works some complication from the gall blad-
I still experience a large amount of at the APD as she has always done. der surgery in that region. Still, all the
pain in my back and also severe pain tests came back negative, and after a
that seems to move up and down in my I would like to thank you very much couple of months with the cramps,
back, with a mixture of a burning sen- for reading this letter. I really appre- tingling and numbness on the increase,
sation at times. After I’ve gone for ciate the work that you are doing for there were no answers.
three physicians’ opinions on my se- the all TM patients in the world. It
vere back pain, I decided to follow will be very helpful if any TM pa- In late February, 2002, my wife went
their advice and start using Morphine tients that experience the same in- with her parents on their planned trip
in the form of syrup. My current dos- tense back pain as I’m experiencing, to Israel. My mother came to stay
age is to take the syrup every 12 hours, can please inform me of what type of
Page 76 The Transverse Myelitis Association
with me in the event something hap- with a minimum of assistance on her the message was getting through from
pened. On 3 March, I was having part, could make it to the bathroom. the brain, and that the foot was work-
trouble moving my legs, and by noon I ran out of arm strength while at- ing again. I think I moved it thousands
that day was totally unable to walk and tempting to sit down on the toilet, of times over the next day or so to be
had to scoot down the stairs on my and, in fact, ended up on the floor sure that I wasn’t imagining it. Even-
backside. My wife, who is a nurse between the wall and the toilet. tually, I was able to support weight
anesthetist, was calling some of her That’s where the nurses found us, and move around pretty well on my
colleagues from Jerusalem and trying laughing, but unable to get up. They walker, freed of the wheelchair.
to get me taken care of. It was a Sun- helped get me back to bed, and I
day afternoon. An anesthesiologist apologized for making them do extra The next greatest day was when I
who works with my wife came over to work. walked up a flight of stairs using my
my house and with my mother and his walker and having the support of my
wife, got me loaded into the car for the I became sick in the hospital; several therapist. I only went up ten steps, but
trip to the Emergency Room at River- days spent retching bile, because the it was like summiting on Everest.
side Hospital in Newport News. That bowel and bladder were also af- Eventually, I was cleared for a week-
was a long scary night, not having any fected. I got the old “nose hose” and end at home to see how I would adjust
explanation as to why I was suddenly my food through an IV. As miser- post-rehab. My wife and I went to
paralyzed. able as I was, the nurses who cleaned dinner; I fell off my walker in the res-
me and changed my beddings and taurant, scared everyone around me,
We began an intensive three-day series administered my medicine and kept but laughed it off. A couple of days
of MRIs and other tests, and finally, on my spirits up were absolutely top later I got released to come home, but
the evening of the first day, the doctors notch. I was happy, however, after 3 continued an aggressive program of
told me they knew what was going on 1/2 weeks to finally leave the hospi- PT. Over the next couple of months,
and had a treatment program in mind. tal and head to Riverside Rehabilita- my therapist and I did all kinds of mo-
Although I had never heard of TM, I tion Institute for intense physical tion and movement exercises moving
was actually relieved that it wasn’t my therapy. Just being outside again, from a walker, to a 4-point cane, a
imagination. We immediately began while waiting for the transport van regular cane, and by mid-summer,
with a bolus of Cytoxin and other was an amazing feeling. walking with no artificial support at
meds. I began physical therapy, all. My parents and in-laws carried me
mainly learning how to move around My weeks at Riverside Rehab were back and forth three or four times a
without the use of my legs. As I was- intense and highly rewarding. The week to the rehab center and were ab-
n’t in any pain, and had my family physical therapists and occupational solutely terrific helping us get through
helping out; and, my wife had flown therapists worked me very hard and all of this. I returned to work, al-
back within 24 hours, I never really helped me use the walker, and other though I was experiencing severe
got depressed or went through the implements I would need upon my burning pains in one leg and severe
“why me” stage. I had an amazing release. The cards, letters, and phone cramping in the other. These sensa-
amount of support from the members calls were an amazing blessing; my tions occurred simultaneously and
of the church I was then attending, as windows and walls were covered. I were set off when I changed positions.
well as from churches I had grown up had a strong Christian upbringing The more PT I did, the less often and
in. My coworkers, even friends I and my faith was dramatically in- less severe the pain. Finally, near the
haven’t heard from in years, were all creased as the hours, days, and weeks end of July, it had ceased altogether.
sending cards and calling on the tele- passed. I was happy and content
phone. with my situation and the people the I still suffer from peripheral neuropa-
Lord surrounded me with. My work- thy in both legs from the knees down.
I guess the worst part of the experience place, The Mariners’ Museum, was It feels very much like the day after a
was being 38 years old and having fantastic throughout. Many col- very bad sunburn. As a result, I find it
your parents see you in a condition in leagues visited and helped me keep difficult to wear long pants. Again,
which you can’t normally take care of working on correspondence when I the museum has been tremendous in
yourself; dependant again as if a tod- wasn’t in PT or OT. My birthday allowing me to wear shorts to work. I
dler, in some respects. That was the was 25 March, and when I was put- keep a pair of longs around when we
toughest part emotionally. There were ting on my TEDS and shoes for the have guests and dignitaries. It is also
comical moments, as well. Soon after day’s work, I became aware that I fortunate that we don’t have long New
my wife got back, I convinced her that could move my right foot up and England winters either!
I was good to go on the walker and down! I was astounded actually that
The Transverse Myelitis Association Page 77
Because my wife’s trip to Israel was some reason, he wasn’t in the office, to sit up, crawl, walk, hold a cup, fork,
cut short in 2002, we both went back so I decided to take her to a pediatri- or even a toy! She had regressed back
there last year for two weeks. We took cian. Since we were new patients to a 4 month old child.
a side trip into the Sinai peninsula and with no appointment, it took us a
both climbed to the top of Mt. Sinai. while to get her seen. While we August 8, 2006, she will be three years
Granted, I rode a camel part of the way waited, she went from being whiney old. We have been fighting this ill-
up, but the last 750 vertical meters to sleeping. While she was sleeping, ness. We thought she was improving,
(straight up) I walked. It was a truly her temperature went up. The doctor but it seems she is having one setback
awesome moment to be at the top of took us back after about an hour and after another. She has to be cathed
the mountain where G-d spoke to a half wait. She took one look at her every 3 hours. She is on medication
Moses after having been paralyzed just and admitted her to the hospital. for infections. She is on Ditropan,
two years prior. The descent was Neurontin, Baclofen, Protonics, Zantac
3,750 steps back down to St. Cath- We were in the hospital from around and Depakote. She was diagnosed
erine’s Monastery, and I still count 11:30 AM until 10:30 that evening. with a neurogenic bladder and epilepsy
that one day’s journey as one of the She went through an MRI, CT scans, since her onset.
major accomplishments of my life. a spinal tap, blood work, EEG, an
EKG and x-rays. She still didn’t She has been stumbling when she tries
I keep up with my medicines; my gen- wake up and her fever went higher. to walk. She has started running a fe-
eral health and my doctors appoint- The doctor had no idea. She waited ver and she cries, because she can no
ments. And, I wear a TM wristband. for test after test and still nothing. longer wiggle her toes like she could a
My wife and I appreciate receiving the She came in our room and told me month ago. The doctor seems to be
TMA newsletter and reading a lot of she had called a hospital in Jackson, very puzzled. I have to listen to my
the stories that have similar accounts. MS and she felt they could do more child cry, because she can’t run and
for her since it was a children’s hos- play with her cousins.
Lyles Forbes pital.
Curator of Maritime Arts and Culture This is our story. No one else around
The Mariners Museum They put us in an ambulance and here that I am aware of has this dis-
[email protected] rushed her two and a half hours ease. It is scary. My husband and I
away. That night they hooked her up worry about her daily and we try to
The Hubbards to machines and told me they had to take it day by day. So I ask that you
Buckatunna MS wait for the rest of her test results. pray for our family as we are praying
The next morning, a neurologist for all of you. Thank you.
My name is Amanda Hubbard. I have came in and told me that her spinal
a 4 year old daughter who, at the age tap showed that she had Guillian- Amanda and Kyle Hubbard
of 17 months old, was found to have Barre Syndrome. She told me about
TM. She was a happy baby. She the syndrome and she also told me Carmencita S. Mendoza
learned to talk at 4 months old and by that they had to put her in ICU and Cagayan de Oro City, Philippines
9 months old, she was walking every- that by the end of the night she
where. On the night of August 7, 2003 would be on a respirator. These doc- I have had transverse myelitis for more
she was fine. For once, she had no tors worked around the clock for one than four years now. My symptoms
infections, no fever and was feeling month on her. first started in October 2002 when I
great. For the past 15 months we had awoke to extreme pain in my lower
been fighting all types of infections When she was well enough, they back and right armpit. My husband,
and unexplained fevers. She came in moved her into a regular room. It Ben, brought me to the doctor who
around 7:30 in the evening and ate wasn’t until then that she was diag- told me it was just ordinary back pain
supper, took a bath and around 8:15, nosed with Transverse Myelitis. and gave me muscle relaxants and pills
she went to bed. to relieve the pain. Despite the medi-
Since that day, we have been in and cine, however, the pain continued and
She woke up around 8:45 in the morn- out of the hospital. Her bladder so I went once again to the hospital
ing on August 8th and she could not doesn’t work well, her bowels hardly where I had an executive check-up.
put pressure on her left leg. We work and she has to get around either The results yielded nothing serious,
thought maybe she pulled a muscle, so by a walker or a wheelchair. When but as my pain continued, my doctor
I took her to our local doctor. For she got sick, she went from being a scheduled an MRI. Results from the
happy 15 month old to not being able
Page 78 The Transverse Myelitis Association
MRI led my doctor to diagnose me continued my physical therapy. After Eventually, with continued physical
with syringomyelia and I was advised about two weeks of constant physical therapy, determination, and with G-d’s
to get an operation immediately. therapy at home, I was slowly able to grace, I was able to slowly walk again.
regain the use of my legs. My back After a while, I regained more control
Since my husband and I were reluctant pain continued, but at least I could of my bladder and bowel movements
to get an operation because of the risks slowly walk again. Since it seemed and managed to stay at home by my-
involved, we flew to Manila (capital to be working, my husband and I self while my husband returned to
city) to get a second opinion from a continued my physical therapy ses- work.
specialist. My second MRI led the sions from home coupled with some
doctor to diagnose me with possible homeopathy. Today, more than four years since my
transverse myelitis and he prescribed ordeal began, my back pain still con-
steroids to help with pain. On April 2003, I awoke to find that I tinues, and I sometimes have spasms
was unable to move my left leg. I of pain which last for a while. My
We went to back to Cagayan de Oro had also contracted a fever and a se- bowel movement and urination remain
where I continued the prednisone and vere headache and had to be admitted impaired. I continue my medication
was to be tapered down for two weeks. to the hospital. There, I discovered (Neurontin, several vitamins and
The steroids seemed to work for a that my paralysis had spread, pre- Methotrexate 3 (2.5mg) tabs a week
while and I was starting to feel a lot venting any movement from the neck and ¼ rivotril, as needed). I find that
better. On January 31, I suddenly down. Once again, I was airlifted to stress increases my pain and I try to
found I could barely lift my left leg. Manila where the doctors, after giv- avoid this as much as possible.
The following day, I found that both ing me another MRI scan, confirmed
my legs were paralyzed and Ben their final diagnosis: I had transverse I am semi-retired, having resigned
rushed me to the hospital where we myelitis. from my post as accountant at my pre-
had more tests done. I was given addi- vious office. I have learned, to a cer-
tional steroids, but this time they did- After the diagnosis, I remained bed- tain extent, to keep peace with my ill-
n’t seem to work. We made the deci- ridden for almost a year. Treatment ness which has taken a lot from me,
sion to once again seek help in Manila. for TM, which is virtually unheard of but which has also, thankfully, left me
in my country, was difficult. Often- with so much still. I find that with a
By that time I couldn’t walk at all. I times, the doctors were uncertain on lot of determination and the willing-
had to be airlifted to the Makati Medi- how to proceed. Because of this, ness to not focus so much on the pain,
cal Center Hospital where no less than Ben and I decided to apply for visas which comes and goes, life is still
eight specialists took on my case. The to the United States where my niece good. And while there are many
weeks I spent in Manila were filled was living. She found out that it was things I would like to change about my
with taking all kinds of tests imagin- possible to arrange for an evaluation condition, I am incredibly thankful to
able. They did a spinal tap, another and consultation at the Johns Hop- the people who surround me, my hus-
MRI, blood tests, urine analysis, and kins Medicine International. Unfor- band, Ben, in particular, who has al-
many other tests. My doctors also as- tunately, at our interview in the U.S. ways supported me and continues to
signed me to begin physical therapy embassy in December 2003, both of support me in this.
while I was there. us were denied our visas. The consul
refused to cite specific reasons for Finding Relief from
For weeks, we waited for a diagnosis. our denial, simply stating that we
But the doctors were stumped. Appar- were not qualified for approval. Per- Neuropathic Pain: A Long
ently, they had never treated a case haps they feared we would not have and Difficult Journey
quite like mine and couldn’t decide enough money to finance our stay in John Craven
among themselves if what I had was the United States despite affidavits of
multiple sclerosis or transverse mye- support and other finances from my The meaning of this paper is simple: if
litis. I stayed about a month in Manila sister who works in the US as a Reg- you have chronic pain and haven’t
and had to take a leave of absence istered Nurse. Whatever the reason, found a way to manage it yet, don’t
from my work as an accountant in the we were not given our visas. So, in despair. Treating pain can be very
Coca-Cola Bottler’s Plant in our city. April 2004, Ben and I opted to return difficult. There’s no way to measure it,
Since the tests continued to yield in- to our home in Cagayan de Oro or to measure progress in treating it.
conclusive results, my husband and I where I could at least be with our Some meds have a very slow response.
returned home the last week of Febru- four children. Some meds may only work for you in
ary 2003 to Cagayan de Oro where I
The Transverse Myelitis Association Page 79
combination. It may be very difficult chair. For the next 6 years, we tried decision and action. You will also
to accept that your treatment may have almost everything that is offered to have confusion. For example, I tried a
many more failures than successes. treat neuropathic pain; acupuncture, clonodine injection several years ago
vitamins, over-the-counter meds, at the Mayo Clinic. It failed to reduce
I’ll use my case as an example partly prescription meds, meditation, spinal pain. We recently added the same drug
because it’s the only one I can speak cord stimulator…. When something to my pump, and it has made a great
about with authority and partly be- helped, I kept it, so I have accumu- improvement! Trying something
cause I’ve tried so many treatments. I lated a package that helps a great again makes sense at times.
started with a traumatic spinal cord deal. I’ve had so many disappoint-
injury. One vertebra was crushed ments that I’ve learned not to get my It may take a long time. Just to try a
(burst fracture), and its neighbor was hopes up. Too much hope can be particular drug may require that you
broken. My cord was crushed and I very painful emotionally. taper up to the full dosage over a
suffered a great deal of bruising. Pain month or more, and then the tapering
due to the cord damage gradually in- Over the years I’ve developed the off slowly, if it didn’t work. The time
creased to that of a red-hot stabbing following recipe that helps me: car- delays can be awful.
sensation, as though I was being bamazepine (Tegretol), mexiletine,
pierced by a sword. nortriptyline, clonazepam Summary: There are a large number of
(Klonopin), and clonodine in my treatments and meds that can help with
I went to several pain clinics and tried (3rd) pump along with all the meds your pain. Finding the right combina-
a number of oral medications which for bowels, spasms, depression, etc. tion requires determination and pa-
either did nothing for the pain or had This is my combination and may not tience. There is no guarantee of suc-
nasty side effects. We tried direct in- work for anyone else. It’s good cess if you try, but there is a guarantee
jections into my spinal fluid. Finally, enough for me to drive to the YMCA of failure if you don’t. Find a good
we implanted an infusion pump which and swim for a half hour non-stop. doctor, and remember that you are not
metered morphine into my spinal fluid. Wow that feels good! alone in your search.
The pain stopped completely! I could
sit. I felt great and excited. That lasted Relief, even partial, can change your Editor’s note: Chronic neuropathic
3 days. The full pain returned, so we life. It will add more activities to pain is one of the most difficult symp-
increased the pump flow. That worked your “can do” list. I now get out in toms of the neuroimmunologic disor-
for another 3 days. Eventually, I was the world a little. I’m not as isolated ders. The relationship between
using a very high dose of morphine as I was. chronic pain and depression is insidi-
which was affecting my mind and still ous; the interaction and the increased
had to increase the dosage every 3 The flip side: As I was writing this, I intensity of these symptoms can drain
days. was called away by an alarm for a the positive spirit from the most gre-
periodic maintenance interval for my garious and wonderful people. When I
That’s when TM hit. I was paralyzed body. I found that I had missed my talk to people who are suffering with
and numb below my chest. The pain morning meds which include car- neuropathic pain, who have become
was gone, but so was everything else! bamazepine, mexiletine, and increasingly frustrated with repeated
The doctors had no idea what hap- clonazepam. Now I understand why failed attempts to find effective treat-
pened until my new neurologist came the stinging pain level was so high. ments and who are communicating
in and knew immediately it was TM. defeat and despair, I often times refer
They removed the pump and catheter Some notes on the search: I am my them to John. After reading this arti-
that led into my spine. They were own greatest resource. I make things cle, you likely understand why I do so.
afraid the hardware was causing a happen. I think about my history At his core, John is such a positive
problem. Since then I have concluded more than anyone. I am the only person. He has been through hell and
that my spinal cord reacts badly to measure of my pain. I am the only back, but he remains dedicated to find-
morphine. The morphine had initiated one who knows the different flavors ing a way to continue to love his life
TM as an attack of latent MS. of pain and what they mean. When and to live it to the fullest. And he has
my 2nd pump was removed, both my taken responsibility for finding the
Over the next 6 months, I regained doctor and her nurse (my wife) told answers for himself using a rational
about 50% use of muscles and sensa- me that a 3rd pump was impossible. I and systematic approach which em-
tion. At the same time, the TM pain had to get approval myself, uphill. phasizes a partnership with his physi-
developed. My legs and feet have This is the reality of the process. You cians.
enough pain to keep me in a wheel- have to be involved deeply in every
Page 80 The Transverse Myelitis Association
Over the years, John has compiled a The Best Seat in the tremendous value on being able to
comprehensive list of medications and make something positive out of the
treatments for managing neuropathic House: How I Woke Up experience and then hang on for dear
pain. His wife, Mary, is a nurse at a One Tuesday and Was life to a positive attitude and world
pain clinic in Idaho, and has worked Paralyzed for Life view. Thus, I so admire people who
diligently with John to create this valu- are able to accomplish this important
Author: Allen Rucker
able tool. It might be helpful for you and amazing feat. Jim Lubin, by the
Published by Harper Collins
to review the medications on this list way, has set the gold standard for a
http://www.allenrucker.com/
for the purpose of discussing options positive attitude and outlook on life in
with the physicians who are treating The Jewish conception of an afterlife the face of adversity. If you can retain
your pain. It is important that you re- has much in common with rooting your sense of humor while managing
view this list in the context of the in- for the Cleveland Indians to win the difficult challenges, you have my
formation we have available on the World Series. We have the greatest deepest respect. Allen got TM and
web site about neuropathic pain and hopes that it is possible, we know accomplished both; he can laugh
treatment options. You will find nu- that if it happens, it will be just awe- (mostly at himself) and he has main-
merous articles about pain treatment in some, but we aren’t going to devote a tained a very positive outlook on life.
the newsletter and journal archives, whole lot of time or energy focusing
and excellent presentations about neu- I loved Allen’s book. Allen chronicles
on it. We find other things to live
ropathic pain management under the his experience getting TM. For those
for, like our families, golf, good
symposia and workshop link on our of you who have TM, NMO or
movies and books and Chinese food.
web site. Please feel free to contact ADEM, you will find Allen’s recount-
I’m Jewish and have been a big
John via email to request an electronic ing of his acute attack, diagnosis and
Cleveland Indian’s fan from my ear-
copy of his pain treatment list: early rehab to be a really intense ex-
liest memories growing up in Cleve-
[email protected] perience. It was for me, and the acute
land Heights, Ohio. These are im-
attack didn’t happen to me. But I lived
portant things to know about me
through this happening to Pauline, and
when reading my comments about
it was impossible not to reflect on each
Allen Rucker’s wonderful book.
Contacting the TMA by Email of her experiences as Allen described
When I was teaching cultural anthro-
his own. Reading about Allen’s ex-
pology, I would start the semester by
When writing email messages to the perience was so intense that I had
explaining to my students that every
officers of the TMA or to support some concern about how Pauline was
anthropologist describes and explains
group leaders, please use TMA, Trans- going to handle reading and thinking
a culture through the filters of their
verse Myelitis, TM, ADEM, NMO or about it. Allen truly captures the es-
own life experience. As much as we
ON in the subject header of the mes- sence of just how horrible and devas-
might try to be objective, it is impos-
sage. Please be sure to include a title tating this experience is for the people
sible to strip our “selves” from how
in the subject header. The volume of this happens to and to their families. I
we perceive of and ascribe meaning
emails that we receive and the way cried while reading this part of the
to anything we observe. This is cer-
spam filters work makes it increas- book; but I also laughed, because Al-
tainly even more the case when giv-
ingly difficult to sort through emails to len writes with a very wry sense of
ing one’s impressions of a book or
find legitimate messages. Also, if you humor about himself and his experi-
movie. This is a good thing to keep
would like to send an attachment, it is ences.
in mind when reading any review or
always a prudent approach to send an watching the news for that matter. Most of the people who read Allen’s
email notifying the person that you are
book will know absolutely nothing
going to follow up your message with This afterlife thing is a big deal. If
about these neuroimmunologic disor-
a second email that includes the at- your belief system doesn’t offer a
ders beforehand. Allen’s account of
tachment; and explain the nature of the clear definition of “some better place
his TM onset will leave an indelible
attachment. If you want to be sure that after the earthly thing,” you’re under
impression on the reader. His descrip-
we see it, save it and open it, please some considerable pressure to make
tion of his confusion about the diagno-
include a subject header in your mes- the best of the here and now. So,
sis and the tremendous uncertainties
sage and use words that will identify that’s where I am; life has to be
surrounding his recovery will ring
you as a person interested in contact- good, because this is all I know
frighteningly true for all of us in this
ing the TMA. We appreciate your we’re going to get with certainty.
community who have shared in similar
help! When really bad things happen to
situations. Unfortunately, Allen had
people (including myself), I place
The Transverse Myelitis Association Page 81
no recovery from the damage caused life and to live his life to the fullest.
by the acute inflammatory attack.
I met Allen in the same way that I
Allen takes us through his journey of meet most everyone with TM; they
rehabilitation and the mental and emo- call me or write to me seeking infor-
tional process of adapting to a totally mation and support. I am so rooting
new life. Of course, TM doesn’t hap- for Allen’s book to do well. He has Southwest Symposium on
pen to a biological life form; TM, created a great opportunity for rais- Neuroimmunologic
ADEM and NMO happen to a human ing awareness about TM. Allen’s Disorders, April 26 -28, 2007
being. People have families, always book is receiving wonderful reviews,
very complicated families, and they including from the New York Times.
The Cody Unser First Step Foundation
have careers or they are students or Allen has been on NPR to discuss his
and The New Mexico Governor’s
they are very young children or senior experience and his book. Allen is
Commission on Disabilities will be
citizens, they have hobbies, they have promoting his book at signings
holding the first Southwest Sympo-
passions of one sort or another. Eve- around the country. If his promo-
sium on Neuroimmunologic Disorders,
rything about life is going to change tional tour comes to your area, please
April 26-28, 2007 in Albuquerque,
after TM. The challenge is always try to attend. It would be wonderful
New Mexico. This two and a half day
about defining what from the former if you had the chance to meet Allen,
symposium will showcase the wonder-
life can be reconstructed, what is going and it is likely that you are going to
ful knowledge and compassion of the
to be lost and what new passions and meet other people with TM, ADEM
experts on Transverse Myelitis, Multi-
opportunities can be defined. Allen and NMO who also come to these
ple Sclerosis, ADEM, NMO, and the
covers all of this difficult emotional, bookstore signings.
other neuroimmunologic disorders.
psychological and physical work in his
I hope you take the opportunity to For several years I have been strongly
book. It tires me out just thinking
read The Best Seat in the House. advocating for collaborative efforts on
about it; but you won’t tire reading
Allen’s very genuine, emotional and TM, MS and the many other neuroim-
about it. Allen’s style is easy and he
humorous insights about an experi- munologic disorders; the time is now!
helps us through the really painful
stuff by giving us an opportunity to ence that we all know so intimately
will hopefully provide you with This symposium will include experts
laugh on occasion – with Allen and at
some perspective and solace. It is a from Johns Hopkins in Baltimore,
ourselves.
must read for those of us in the TMA Maryland, University of New Mexico
Allen writes about his family’s role in community! It is sometimes difficult in Albuquerque, New Mexico, Reeve
his rehabilitation experience. As hap- to find the right words to express our Irvine from Irvine, California, and
pens in so many of these situations, the feelings and thoughts to our family Kennedy Krieger Institute, in Balti-
family takes the central place as advo- and friends. The greeting card com- more, Maryland and many others. Im-
cates, caregivers, emotional supporters panies know this, and work very hard portant information will be presented
and cheerleaders. It was no different to offer us a great variety of senti- on acute and long-term treatments and
for Allen and his wife, Ann-Marie, and ments in order for us to find just the rehabilitation that focus on hope for
their two sons. Allen also addresses right expression we are attempting to improved quality of life for people
the financial burdens that invariably convey. I know that there are many with these disorders. The symposium
surround this experience. He provides of you who have tried to communi- will be held at the Nativo Lodge in
us with a very sobering reflection on cate how TM or ADEM or NMO has Albuquerque which provides an inti-
some very difficult times. so profoundly and dramatically mate feel of the Southwest. We have
changed your life to family, friends worked very hard to keep the cost
I greatly admire and respect Allen for and co-workers, but have had a tough down so that we can provide this op-
his courageous work in writing this time capturing the enormity of the portunity to as many patients and their
book. He is so honest and candid in situation. Please consider Allen’s families as possible. We are inviting
exposing his vulnerabilities, his confu- book as the message you have been neurologists, primary care physicians,
sion, his anxiety, his self-doubts, as trying to share with these people in emergency physicians, physiatrists,
well as the very difficult work that your life. By reading Allen’s book, general practice physicians, medical
goes into finding meaning in one’s life they will learn something incredibly students, nurses, and physical and oc-
after losing so much. Allen demon- important about you and they will cupational therapists. We are also
strates a remarkable ability to adapt, to also learn something of great value placing an emphasis on reaching out to
laugh at himself, to continue to love about themselves. physicians who practice in rural areas
Page 82 The Transverse Myelitis Association
of the Southwest. We urge you to en- Nativo Lodge 1.00 - 1:30 Accute Therapies: Steroids,
courage your own physicians and 6000 Pan American Freeway NE IVIG, Plasma Exchange, Cytoxan
therapists to attend. The success of Albuquerque, New Mexico 87109 Benjamin M. Greenberg, MD, MHS
this symposium really depends on the (505)798-4300 Johns Hopkins University
participation from those of you who Toll-free: (888)628-4861 1:30 --2:00 Pediatric Multiple Sclero-
have these disorders and your families. http://www.hhandr.com/nativo sis
We know you will learn so much from TBA
the experts who will be presenting, and For additional information about the Nancy Davis Center Without Walls Pedi-
we know that you have so much to symposium, please contact: atric MS Centers
teach them, as well. The symposium
2:00 - 2:30 Clinical Significance of
is a time of understanding, sharing UNM School of Medicine
Demyelinating Lesions of the Central
ideas, and connecting with each other. Office of Continuing Medical
Nervous System
So, please don’t miss out! I really Education
Elaine S. Edmonds, MD, PhD
hope to see all of you at the Southwest MSC09 5370 1 University of New University of New Mexico
Neuroimmunologic Symposium in Mexico
Albuquerque this April. We are all in Albuquerque, NM 87131-0001 2:30 - 3:00 Refreshment Break
this fight together and I can’t wait to http://hsc.unm.edu/cme 3:00 - 3:45 Scientific Advancements:
see you there! Neuroimmunological Disorders
Southwest Symposium on Oswald Steward, MD, PhD
Cody Unser Neuroimmunologic Disorders University of California at Irvine
Founder of the Cody Unser First Step
Program Schedule 3:45 - 4:15 Depression in Tranverse
Foundation Myelitis and Multiple Sclerosis
Thursday, April 26, 2007 Adam I. Kaplin, MD, PhD
The conference is presented by the Johns Hopkins University
Cody Unser First Step Foundation and 3:30 - 5:30 Early Registration and
The New Mexico Governor’s Com- Welcome Reception 4:15 - 5:15 Conception, Pregnancy,
mission on Disabilities in conjunction and Labor in Women with Demyeli-
Friday, April 27, 2007 nating Disease
with the University of New Mexico
School of Medicine. The registration 7:00 - 9:00 Registration and Conti- Donna Chattin, RN and Benjamin M.
form for the symposium is being nental Breakfast Greenberg, MD, MHS
Johns Hopkins University
mailed to all TMA members. You can 9:00 - 9:15 Conference Goals and
also find the registration form through Welcome Address 6:30 - 8:30 Dinner and Entertainment -
links from the TMA, Cody Unser First Paul B. Roth, MD, and Leslie A. Showing Quality of Life
Step Foundation and the New Mexico Morrison, MD Saturday, April 28, 2007
School of Medicine web sites. You University of New Mexico
may also register by phone at (505) 7:00 - 8:30 Continental Breakfast
9:15 - 10:00 Rare Neuroimmu-
272-3942. For TMA members, the nologic Disorders: An Overview 8:30 - 9:15 Neuroprotection and Neuro
registration fee is $75 per person, if Benjamin M. Greenberg, MD, MHS Repair of Demyelinating Lesions of
registration is completed before April Johns Hopkins University the Central Nervous System and Its
13th. After April 13th the registration is Clinical Significance
10:00 - 10:45 Transverse Myelitis
$115 per person. Childcare will be Corey C. Ford, MD, PhD
Douglas A. Kerr, MD, PhD University of New Mexico
provided for younger TM patients so
Johns Hopkins University
that parents might be able to attend the 9:15 - 10:00 Pediatric Transverse
symposium. 10:45 - 11:00 Refreshment Break
Myelitis and ADEM
11:00 - 11:30 Predicting Neuromye- Leslie A. Morrison, MD
You will need to make hotel reserva- litis Optica University of New Mexico
tions; these arrangements are not in- Biljana D. Beretich, MD 10:00 - 10:15 Refreshment Break
cluded in your registration. Special University of New Mexico
rates are available if you make your 10:15 - 10:45 Strategies for Spasticity,
11:30 - 12:00 Rare Presentations of
room reservation no later than April 5, Imaging of Recovering and Interven-
Multiple Sclerosis
2007. Participation rates are $70.00 tion
Corey C. Ford, MD
for a single and $80.00 for a double. John P. Phillips, MD
University of New Mexico
To make room reservations, please University of New Mexico
contact the hotel directly: 12:00 -1:00 Lunch
The Transverse Myelitis Association Page 83
10:45 - 11:15 Rehabilitation Pathways in fact headed to the TM Retreat
to Pain Management Weekend at VJGC. I handed my
Denise Taylor, MD TMA wristband to the woman and we
University of New Mexico introduced ourselves. They were on
11:15- 12:00 The Primary Care Physi- the third leg of their trip from Kenai,
cian’s Role with Transverse Myelitis Alaska to Greensboro, and more than a
and Multiple Sclerosis day of flying.
Alyson P. Thal
And so began our VJGC Retreat
Corrales Family Practice
Weekend Adventure. Maggie, Huey,
12:00 - 1:00 Lunch and Sheena, The Alaskans, were a
1:00 - 1:30 Neurorestorative Principles very fitting introduction to what was
of Rehabilitation one of the most emotional, exciting,
John W. McDonald, III, MD, PhD and sensational experiences Pauline
Kennedy Krieger Institute and I have had since becoming in-
volved with the TMA. The camp was
1:30 - 2:15 Promoting a Lifestyle of
scheduled to begin on Friday after-
Health and Fitness in Children and
Adolescents with Motor Impairments Victory Junction Gang noon, November 17th. We arrived on
The UNM Carrie Tingley Hospital Camp TMA Retreat Wednesday. Our weekend retreat co-
incided with an international directors
Rehabilitation Team
Carrie Tingley Hospital NM
Weekend, November 2006 meeting for all of the camps in the
Hole in the Wall Gang Camp Associa-
2:15 - 2:45 Sexual Dysfunction in Pauline and I boarded the connecting tion. The directors were gathered at
Neuroimmunologic Disorders flight from Cincinnati to Greensboro. VJGC for an annual best practices
Adam I. Kaplin, MD, PhD Johns Hop- It was a small commuter plane and meeting. The TMA was invited to a
kins University we were sitting two rows behind the breakfast meeting of the directors and
2:45 - 3:45 Moderated Discussion bulkhead. After all of the passengers had the opportunity to make a presen-
among Multiple Sclerosis/Transverse were seated, there was some commo- tation about TM, the TMA and our
Myelitis/NMO/ADEM Community, tion at the entry way. It was pouring partnership with Victory Junction
Pediatric and Adult Issues, Question outside. As it was a small plane and Gang Camp. I dedicated my remarks
and Answer Session there was no jet ramp, people had to to the directors to Maggie Winston. A
board using a stairway. Two young few of the directors remained at Vic-
Moderators: Chitra Krishnan, MHS people were struggling to carry a
Johns Hopkins University tory Junction during the weekend as
woman into the plane in a wheel- volunteers.
Sanford J. Siegel, PhD chair. The three of them boarded the
President of The Transverse Myelitis As-
plane soaking wet and then trans- Victory Junction Gang Camp was
sociation
ferred the woman into her seat in the started and is operated by Pattie and
Panel of Doctors: Corey C. Ford, MD, bulkhead. The beautiful woman who Kyle Petty to honor their son, Adam.
PhD; Benjamin M. Greenberg, MD, boarded was a full quadriplegic and Before Adam died in a racing accident,
MHS; Adam I. Kaplin, MD, PhD; had very stylish streaks of turquoise- he had expressed an interest to his par-
Douglas A. Kerr, MD, PhD; John W. blue hair. My immediate thoughts ents about starting a camp for children
McDonald, III, MD, PhD; Leslie A. were, they’re coming to Victory with disabilities or serious illnesses.
Morrison, MD; Oswald Steward, MD, Junction, and I bet my hair would Their camp is more than a fitting trib-
PhD look really good like that. The ute to Adam. By looking at the photo-
Late Afternoon Activities young man she was with began look- graphs of VJGC, it is obvious that the
ing for some room in the overhead camp is just a magnificent place. The
Unser Museum for Patients and Fami-
storage compartments. He stopped photographs also provide some sense
lies, Sign ups are required for this ac-
and looked above my seat to find of the range and variety of the recrea-
tivity. (See Registration Form)
enough space to store his skateboard. tion programs that are available to the
Ongoing: Demonstration of Restora- Pauline said, “They’re definitely children, regardless of the severity of
tive Therapies FES (Functional Elec- coming to Victory Junction.” I the disability. What is not obvious
trical Stimulation) 300-s Cycle called out to confirm our suspicions, from the photographs is the love and
and the three of them shouted back care that surrounds these children at
with exhausted delight that they were camp. Our 17 to 25 year old
Page 84 The Transverse Myelitis Association
“children” came to VJGC and were AM on Saturday morning, I pretty and about VJGC. They are very hum-
provided the time of their lives. We much had the camp to myself. I did ble and soft spoken and spiritual peo-
had more than twenty people come have Courtney to keep me company ple who are quick to not take credit for
with parents, siblings, friends or com- as she was having a beautiful blue the amazing creation that has arisen
panions. They came from as far away streak dyed into her hair. It’s all just outside of Greensboro, North
as Alaska and California and from about fashion at Victory Junction. Carolina. But it is their creation; it is
across the country for a three day their love and their devotion, and it is
weekend. For all of them, it was a In addition to the very intense bond- so obvious that it has grown and flour-
vacation away from their challenges ing that went on between the kids ished from the love of their son. Their
and their difficulties. and between the parents, the camp honoring of Adam’s vision and their
was filled with volunteers who as- enormously hard work and their posi-
On the Thursday evening before camp, sisted each of the kids and families tive energy permeate every facet of
Dr. Peter Sim and some of the other throughout the weekend. These peo- this wondrous place. We have so
directors and staff hosted a dinner for ple come from across the country to much respect and admiration for this
the TMA officers, Dr. Douglas Kerr, volunteer their time and their posi- lovely family. The TMA will never be
Dr. Adam Kaplin and Chitra Krishnan. tive energy to help make this week- able to adequately thank the Petty’s
Everyone at the dinner knew that Jim end one of the most memorable and and the VJGC directors and staff for
Lubin was flown into the camp for the wonderful possible. The directors this most incredible opportunity that
weekend, except for me and Pauline. and the full-time staff are responsible has been offered through our partner-
Jim rolled into the room to surprise us! for the day-to-day operation of the ship. VJGC has committed to holding
We were more than surprised. Being camp. Maintaining the facility, con- a bi-annual retreat weekend and sum-
able to spend the weekend at camp ducting the programs and operating mer family camp for the TMA com-
with Jim was one of the most amazing the logistics issues of camp are just munity. A weekend at Victory Junc-
experiences and joys I have had in my enormous and complicated jobs. The tion Gang Camp reinforced for me and
life. Jim’s brother, Joe, and Jim’s camp is so well run. Dr. Peter Sim is Pauline, for the other offices, for
nurse, Joyce, also made the trip. It the medical director at the camp. Doug, Adam and Chitra and for the
was the first traveling Jim had done in Peter and Emily Parenteau ensure wonderful people who attended from
twenty years. The dinner discussion that everyone who comes to camp is the TMA community that the very best
was incredible as Drs. Kerr and Kaplin safe and is well-cared for. They of the human spirit is alive and well!
talked about their research and an- have a comprehensive understanding
swered many, many questions. Jim of all of the medical issues of the Jim Lubin
and I were up talking to each other campers and are fully prepared to
until 2:00 in the morning. meet every camper’s unique needs. I just got back from The Transverse
They also recruit additional medical Myelitis Association Young Adult's
By the time the campers began arriv- personnel when the needs warrant. Autumn Retreat at Victory Junction
ing on Friday afternoon, I was already Gang Camp. I flew from Seattle, WA
emotionally spent. And then we had Parents and campers had the oppor- to Asheboro, NC on a Learjet provided
three days of one of the most emotion- tunity to listen to a presentation by by Jet ICU. I was picked up at my
ally exhausting and exhilarating ex- Dr. Kerr and Dr. Kaplin on Saturday house by ambulance, taken to the air-
periences one could possibly imagine. evening about research being done at port and transferred on to the jet. The
There is no way to communicate the the Johns Hopkins TM Center. Drs. total trip took about 5 hours 40 min-
intensity of the experience. There Kaplin and Kerr and Chitra were utes with a stop in Omaha, NE to re-
were so many incredible and personal available all weekend for campers fuel. Flying at 41,000 feet at 585 mph
moments throughout the weekend. and parents to ask questions. was so smooth. I went with my nurse,
The camp facility is truly amazing. an ICU nurse and a respiratory thera-
Four of the campers were quadriple- From the arts and crafts activities, to
pist. They told me that was how
gic, and these people had access to fishing, to horseback riding, to the
Christopher Reeve traveled. The flight
every building and activity at the awesome food, to the dancing and
nurse told me that we use the call sign
camp. The bonding that occurred dur- the incredible talent show, everyone
Lifeguard, meaning medical transport,
ing the weekend was wonderful. Most had a great and a fun time. The only
so that we have priority status going
of the kids were up talking to each thing people didn’t want to do during
into any airport. Only two other air-
other for most of Friday night. While I the weekend was leave.
craft have priority over that, Air Force
was having my nails done in sparkly One and Air Force Two.
We had the opportunity to talk to
purple polish in the Fab Shop at 7:00
Pattie and Kyle Petty about the TMA
The Transverse Myelitis Association Page 85
I don’t go out much at all. I did go to a What What? For my mom, having the opportunity
meeting we had here in Seattle a few Kathryn Alexander to listen to and speak with Drs. Kerr
years ago. That was the time my venti- and Kaplan was invaluable. All she
lator stopped working in the van on the Kudos to all who helped put together kept saying when we returned home
way home. I had to be bagged for such an awesome Transverse Mye- was, “They are such busy people and
about 20 minutes until I made it home litis weekend at Victory Junction in yet they sat so graciously and an-
to my other vent. One of the doctors North Carolina. To be together after swered our questions and listened to
mentioned that he was surprised when so many months and even years of our tears.” Thank you for making this
he heard I agreed to go after that had feeling like we were the only ones an amazing weekend for her, too.
happened before. I figured there was a with this unusual TM diagnosis was
backup vent on the plane, so there was just what we all needed. What a fun Blessings and thanks to all the suppor-
nothing to worry about. time to see old friends, some of tive and loving counselors, the nutty
whom were looking so svelte; they camp staff, everyone who spent a zil-
I was at Victory Junction Gang Camp lion hours planning, the Petty family
with my brother and nurse, Thursday were hardly recognizable aside from
their sparkling smiles! And what a for providing such a welcoming and
through Sunday. VJGC is really cool fun-filled facility, all the doctors who
and the people are some of the nicest I time to bond with new friends from
all over the globe – from as far north gave us hope, and for each and every
have ever met. Everything there is camper for risking, sharing their lives
fully accessible. I met others with TM as icy Alaska and as far west as
sunny California. and helping to melt troubles like
and saw some friends again. I was able lemon drops.
to watch Star Wars Episode 3 on a big
projection screen. I don’t get to go to The Petty family’s generous If happy little bluebirds fly;
a movie theater. I made some new spirit provided a wonderland atmos- Beyond the rainbow;
friends and just had a really great time. phere at Victory Junction, and being Why, oh why can’t I?
there allowed us all, no matter how
I got to meet another vent dependent extensively the TM had altered our Elizabeth Cross
quad due to TM. She is 17 and just lives, to fully enjoy a of weekend of
got sick a year ago. She was born just laughter and tears. The week- November 17th to November 19th 2006
ten days before I got sick. She is awe- end theme of Welcome to Oz and the was almost certainly one of the best
some! She decided to sing at the talent challenge to us to personally appre- times of my life while being “sick.”
show at camp, and also did a “stand hend the courage, heart and mind For those three days, I got to forget
up” comedy routine. I was laughing that the Oz characters were seeking, about treatments, I got to leave behind
so much, my eyes got teary. brought new meaning to this child- the rumors I get from kids back home;
hood story I know so well, and I got to have fun with other kids who
I felt like a kid at Disneyland. I don’t helped me to see I can do any- were going through something like
know if you have seen that Disneyland thing! Over the Rainbow was one of me! For once, I didn’t feel alone. Eve-
commercial where the little kid says, the lullabies my mom used to sing to rywhere I turned, someone was smil-
“We’re too excited to sleep,” that’s me as a baby and for her it was im- ing! It was contagious, in a good
exactly what it was like. I went to bed possible to hear this sung without wayJ. I am very grateful that I had the
around 3:00 AM; then my nurse tears – healing tears though, that opportunity to attend the (TMA) Vic-
started getting me up at 6:30 AM so brought new hope. tory Junction Gang Camp. I learned
we would make it to 8:30 AM break- that you cannot spend every moment
fast. No one wanted to miss anything. The highlights for me were being of your life dwelling on why you can-
As one of the camp directors said dur- able to ride a horse again, watch my not do certain things, but that you have
ing the closing program, “sleep is mother make a fool of herself doing to just live life to the best you can. We
overrated. You can sleep when you the chicken dance and the YMCA, are all strong no matter what condition
leave camp.” eat cheesecake on a stick, Catch, we are in. Hopefully, I’ll see you at
Kiss and Throw Back any fish we the next Victory Junction Gang
If anyone ever has an opportunity to
happened to catch, color our hair and Camp Retreat!
go to Victory Junction Gang Camp,
nails outrageous colors, and laugh at
don’t miss going. I can’t even fully Huey Winston
Jose Dominguez and PP as they and
describe how much fun I had. Go as a
so many others entertained us with
volunteer if you are a kid at heart. Victory Junction to me was nothing
complete craziness and love.
http://www.victoryjunction.org/ but love and happiness. Only positive
energy exists there. Seeing everyone
Page 86 The Transverse Myelitis Association
come together and share experiences place like the VJGC during the TM me be a part of this incredible experi-
was overwhelming. Just being there weekend, I wouldn’t have believed ence.
gave me a feeling that is almost inde- you... Wouldn’t have even been able
scribable and then being there with to even imagine it... Having experi- Jessie Danninger
people we could relate and talk to was enced it for myself, I wouldn’t have
almost too much. We learned so much missed a minute of it!!!! The weekend was amazing! It was so
and gained so many new friends. I satisfying to see people with TM meet
love Victory Junction and did not want Maggie Winston others with the illness for what was
to ever leave, and can’t wait to go probably the first time in their lives. I
back. Victory Junction is a truly magical know such an encounter would have
place, and I got the chance to experi- helped me feel less lonely and afraid
Adam Kaplin ence magical people IN a magical when I first became ill. It was also
place for an entire weekend that felt thrilling to finally meet another person
To say the VJGC TM weekend was like a lifetime. As soon as we with my particular disability -- hand
inspiring is such an understatement it stepped off the bus that picked us up problems! We really connected and I
is like saying the sun is a decent at the airport, we felt like we were hope I inspired her and her family as
source of light... Of course, the setting home, when in reality we were the much as they inspired me.
was unbelievable (picture a Disney- farthest away from home as we had
world built around a racing theme, ever been. We went to bed smiling Cody Unser
where all activities are completely ac- every night feeling wholeheartedly
cessible, and populated by a group of blessed to be there. Anyone who Have you ever had moments in your
magical counselors and volunteers goes there and doesn’t do everything life you just wanted to freeze in time
who make the impossible become pos- in their power to go back is crazy. I because they were so amazing and
sible with unending good cheer, caring am a better person after being there breath taking you couldn’t let go?
and compassion)... But as one might and meeting everyone. See you That’s what I wanted to do when I was
have guessed, the setting is the back- all again in August! on the bus leaving camp back to the
ground for the main event, which is airport to go back to the craziness of
what happens when you get a group of Douglas Kerr life. I remember thinking, “This camp
people who are directly or indirectly is not only a place for love and friend-
touched by TM together in a suppor- For me, the VJGC was an amazing ship, but a place of hope.” The very
tive, safe and mutually respectful experience that was truly life- first night we girls, Molly, Martha,
way… Which is what the VJGC camp changing, a term I don’t think I’ve Laura, Andrea, and I stayed up so late
and the TMA are so expert at doing... ever used before. I see kids with TM laughing and sharing everything about
People who didn’t know one another all the time and I have dedicated my ourselves that only we would under-
just a few moments ago are suddenly life to treating them to the best of my stand since we were affected with
the best of friends... People who never ability. And the group at Hopkins is Transverse Myelitis. It was that mo-
knew that anyone could possibly un- unlike any group at any institution in ment I knew the weekend was going to
derstand what it was like to feel the the world in terms of their ability, be unforgettable and that these girls
way they do, find others who have ex- intelligence and compassion. But we were forever friends. Singing, danc-
perienced the exact same feelings... don’t see kids and families like this. ing, playing, acting, made everyone
People who thought that they were We hadn’t met some of the incredi- smile and laugh, which underneath
learning so much from others come to ble families and learned their stories. said, “Everything is not only going to
realize that they taught others so much We hadn’t met Maggie, Alana, Brian be alright but spectacular”! So I just
more, in ways they could not have and the rest. We hadn’t had time to wanted to thank the big heart at Vic-
imagined, merely by having shared get to know the TM patients person- tory Junction and the wonderful gang
their experiences and observations... ally since we had to spend so much from the bottom of my heart for mak-
Spending time at the camp is transfor- effort caring for them. We hadn’t ing the Transverse Myelitis Youth Re-
mative, where each day becomes seen them struggle. We hadn’t seen treat Weekend full of moments I
vastly more than 24 hours could possi- them smile and be normal. We had- wanted to freeze. You guys not only
bly contain... In exchange for time n’t seen joy in their faces. To see generate love and friendship, but most
spent, each participant receives hope this was fun. It was exhilarating. of all hope! Thank you so much! I
mixed with just the right amounts of And it redoubled my commitment to will see you all hopefully soon!
laughter, reverence and love... Before I develop better treatments and cures
went, if you’d told me that there was a for TM patients! Thanks for letting
The Transverse Myelitis Association Page 87
Amy Shultz really does live up to its name. I had throughout your stay, as well as good
the best time just being me. Little did food. Another thing that was cool was
I had the opportunity to attend the TM I know there are just as many goofy, how the whole place looks. It is like
retreat weekend at Victory Junction funny, wonderful people I needed to a race track. All the buildings in Vic-
Gang Camp. I arrived Friday evening meet. Meeting the TMA family was tory Junction are themed with this
a little scared and reluctant, not sure such a great victory. The Alaskans, overall look. I plan to go back some-
what to expect. I was greeted by some Maggie, Huey, Shena, I wish I could day.
really wonderful, positive, upbeat la- have spent more time with you. I felt
dies, Jenna, Dee and Donna whom I like I knew you all of my life. Huey, Paula Lazzeri
spent the weekend with. I quickly re- you definitely have a permanent part-
alized how special this place was. Af- ner anytime doing comedy. I hope to What an amazing time we all had at
ter dinner they quickly started getting see the Alaska group soon. Victory Junction in November 2006. I
me to loosen up with getting involved went as both a volunteer/mentor and
in the singing and dancing. I ended The one thing that sticks out the most officer of The Transverse Myelitis As-
the evening talking to others with TM. in my mind is the love and bond I sociation. My brother, Perry, came
It was truly incredible hearing how have with my sister, Paula. We don’t along as a volunteer also. Our long
similar our stories were. We were able always get to see each other, but we weekend with the young adults was a
to talk to and relate to each other in a made up for it. It was great to be able time of questions, bonding, laughter,
unique way. to share the experiences my sister and so much fun.
went through. When Paula came
Saturday morning arrived with an up- down with TM, our family was just Victory Junction is a magical place.
beat and positive energy which flowed as scared as she was. Our lives were They have built an incredible camp.
throughout the day. My day was filled forever changed. As the years There is never a loss for things to do. I
with plenty of laughter, plenty of fun, passed, I learned so much and found volunteered in the arts and crafts
and many happy tears. With the day myself being a better person for building. We made scrapbooks, pom-
ending hearing some really good up- those experiences. Paula, thank you pom animals, and green slime. The
dates from Dr. Kerr and Dr. Kaplin. for letting me be a part of a monu- choices were endless for the kids. It
mental weekend. was nice to see them leave with a
Sunday morning arrived way too keepsake.
quickly bringing an end to an awe- As for the TMA family, it was great
some weekend. Everyone there at meeting you and hope I see you The volunteers at Victory Junction
Victory Junction is truly special for soon. I will never forget the laughter were awesome. From the people who
what they do. I could really tell how on Sandy’s face when Jose and PP worked in the kitchen to the cleaning
much they cared about us. My experi- did the famous “Stormy Symphony.” fairies, they all truly understand giving
ence there is something I’ll never for- I hope everyone got exactly what I from the heart. We watched everyone
get. I’ve not had a weekend so full of got out of VJ weekend, a rejuvenated sing, dance, and make friendships.
memories and fun for nearly ten years. smile and loving heart that makes me
VJ is truly an incredible place with say thanks everyday. THANK YOU Having Dr. Kerr, Dr. Kaplin, and Chi-
incredible people. for letting me make you laugh, TMA tra from Johns Hopkins was also a
family. highlight. I watched each of them
As I pulled away Sunday a changed
work tirelessly to get to know each
person, I vowed to let everyone know Josh Droy camper. They were up early and out
how much it meant to me. I wish to
late answering every question posed.
thank everyone who I shared this When I first heard about Victory
Thank you for taking time away from
weekend with, from the bottom of my Junction I didn’t really want to go.
your families to help us all.
heart for all the wonderful memories. Many times I was asked and still was
uneasy about it. Finally I gave in and
Perry Peltier (forever known as said I would give it a chance. I was
I want to take this time to thank my
Paula’s brother) brother, Perry, for coming to camp.
kind of nervous when I got there,
By the end of the retreat everyone
because I didn’t know anyone. How-
In hopes of greater things for 2007, I knew Perry. I’m positive we will all
ever, it was easy to get to know peo-
look back to 2006 with memories that remember Jose Domingos on stage
ple. The people are friendly and
I will always have; a weekend of night. You made each camper and
make you feel as if you are at home.
laughs, tears, hugs, and a time to meet volunteer smile! Thanks so much for
They have many fun things planned
new friends. Victory Junction, it being a wonderful and supportive
Page 88 The Transverse Myelitis Association
brother. I love you! You are applying to VJGC and the that the camp will be able to transport
camp must accept you and your fam- you and your family from the airport
It meant so much to see this camp fi- ily. This is an important point to to camp.
nally happen. The bonding and friend- keep in mind. VJGC is offering a
ships each person made there was family camp to the TMA commu- TM Family Camp will conclude mid-
priceless. I only wish Victory Junction nity. This is their camp; we are the day (about noon) on Friday, August
would have been around when I was a guests. We are partners with VJGC 24th. Everyone should be prepared to
young adult with TM. I look forward in making this incredible dream into vacate camp by mid- to late-afternoon,
to volunteering at each future camp! a reality, but the recreation program, either to an airport for a departure
the application process, the logistics flight, or to alternate lodging.
(medical and travel and all others),
and all of the rules are all about Your point of contact at Victory Junc-
VJGC. You must fill out the applica- tion Gang Camp regarding the applica-
tions, the camp will review all of tion process is Kristin Wolbert. Kris-
your information, including all of the tin can be reached at: (336)495-2002;
medical information that is sent by her email address is kwol-
your physician, and then they will [email protected]. If you have
The summer family camp for kids with notify you as to whether you have any medical issues that you would like
TM, ADEM and NMO will be held been accepted. to discuss, please get in touch with
from August 19 to August 24, 2007 at either Dr. Peter Sim or Emily Par-
Victory Junction Gang Camp. The Please do not make any travel ar- enteau. Dr. Sim’s email is:
camp is about 20 minutes south of rangements until you have been [email protected] and Emily’s
Greensboro, North Carolina which is accepted to camp by VJGC! Do is: [email protected]. The
on Eastern Standard Time. The camp not pay for plane tickets until you person who is responsible for coordi-
is for kids with TM, ADEM and NMO have been accepted. nating our entire family camp at VJGC
who are 7 - 15 years old and their sib- is Genie Gunn. Genie’s email is:
lings and parents. The maximum ca- Piedmont Triad International (GSO, [email protected].
pacity of the camp for our week will Greensboro) is the closet airport to
be 32 families. We recently received VJGC and the usual preferred pick- VJGC is a camp, but this is not about
an update from Victory Junction and up location. If you are flying to sleeping outside in tents on rocks and
30 applications have already been sent camp from within the US, please waking up at 5:00 in the morning to
in by TMA families. If you have an make your reservations to fly into start making dinner. There are 32 cab-
interest in coming to camp in 2007, Piedmont Triad and please discuss ins with very comfortable beds. There
you will need to send in an application pick-up arrangements with VJGC. If are fully accessible showers with
as quickly as possible. you are flying to VJGC from over- benches. Meals are served in a large
seas, Piedmont Triad in Greensboro cafeteria and the food is totally awe-
There are two applications that you is not truly an International airport. some and nutritious. There is a full
will need to fill out and submit to the VJGC would not expect families to time medical staff and there is an ex-
camp: book connector flights to GSO unless tensive voluntary medical staff; the
it made sense to do so. Raleigh- camp will bring in medical personnel
http://www.victoryjunction.org/ Durham International Airport (RDU) to accommodate all children’s
aa_apply/apply05_application.html is the preference as the arrival loca- needs. The medical director of the
tion for our International TM camp- camp is a physician and there is a
There is a medical section of the appli- ers and families with a direct connec- nurse practitioner who heads the medi-
cation that will need to be filled out by tion to North Carolina from overseas. cal staff program. The camp will col-
your doctor. Please send your portion If a family is flying from say, Paris lect enough information about your
of the application as soon as you have to New York, and can then fly into child to ensure that they have a safe
it completed. Do not wait for the phy- GSO as opposed to RDU, that’s experience at camp. This camp is to-
sician section; that portion can be sent great. VJGC will arrange for pick tally about being loved, cared for and
in later. There could be cancellations, ups from the airports, so before you safe. The medical facility at the camp
but at the present time, there may be finalize your travel plans, please con- is exceptional.
only two openings available for the tact the camp directly if you are not
2007 camp. going to be flying into Greensboro This camp is about fun! The kids with
(Piedmont Triad Airport) to ensure TM, ADEM and NMO are going to
The Transverse Myelitis Association Page 89
have an awesome time, their siblings http://www.victoryjunction.org/ membership form on
will have an incredible time and the aa_help/help05_volunteers.html www.myelitis.org or when the original
parents will also. VJGC will cover the email or telephone contact with the
cost of everything at camp. You only If you are interested in coming to Association was made. If you are not
have to pay for your travel. VJGC TMA family week, but are not currently listed in the directory, and
able to do so in 2007, please get in would like to change your designation
Drs. Doug Kerr, Adam Kaplin, Greg touch with me: [email protected] so that you can receive the directory,
Barnes, Frank Pidcock, Ben Green- and I will be sure to add you to our please call (614)766-1806 or send an
berg and Chitra Krishnan from our list for recruiting purposes. Victory email to: [email protected] request-
Medical Advisory Board will be at Junction Gang Camp has committed ing that your contact information be
camp for the week with their families. to holding a TMA family camp every listed.
They will make formal presentations other year. Once you are added to
on the most up to date research and our recruiting list, you will be con- This would also be a good time to
there will be many informal conversa- tacted by the TMA as soon as the check the directory to be sure that your
tions during which you will be able to application process is initiated for the current information is accurate. If
ask them questions. There will also be next camp. your phone number or email address
opportunities for the parents to talk to has changed, please notify us. Your
and share with each other. But first membership information will be up-
and foremost, the camp is going to be dated. When you send us any changes,
family fun, for all of our TMA mem- please include all of your information
bers and for the medical advisory so your membership listing can be eas-
board and their families. Important Reminder About ily found and the changes identified.

It is important that everyone have real- The Transverse Myelitis In addition to receiving the directory,
istic expectations of what the physi- Association Membership another important benefit of being
cians can provide you during the week Directory listed in the directory is having access
at camp. The doctors will not examine to local support groups. Over the past
your child at camp. The doctors will several years, our local support groups
In order to receive a TMA member-
be there to talk and they can certainly have been developing around the
ship directory, you must be willing to
offer some general advice. They country and around the world. If you
have your name and contact informa-
won’t be doing any testing or evalua- are not listed in the membership direc-
tion listed. Those who have desig-
tions; what you get from the doctors tory, we assume that you do not want
nated that they do not want to be
cannot be the kind of information that to be contacted. We do not provide
listed in the directory will no longer
derives from a thorough medical ex- your information to anyone, including
receive one. The purpose of the di-
amination. the support group leaders who are cur-
rectory is to assist our members in
rently operating in and around your
finding each other in their local com-
If your child with TM, NMO or area, or to those who will establish
munities, states and countries. As
ADEM is 19 years old or older, they groups in your area in the future.
our membership is small and widely
might be interested in applying to
scattered around the globe, the direc-
VJGC to come as a volunteer for our Due to the increasing size and cost of
tory serves as a way to facilitate the
family week. The many volunteer op- the TMA Membership Directory, we
local or regional sharing of informa-
portunities are identified on the Vic- will be printing and mailing new direc-
tion and support. The value of this
tory Junction Gang Camp web tories no more frequently than every
directory is commensurate with the
site. VJGC will make all of the deci- two years. If you are not currently
numbers of our members who are
sions about who is accepted as a vol- listed, please consider doing so. We
willing to participate in our support
unteer. The volunteer application appreciate the willingness of so many
network.
needs to be filled out and submitted to of you to make yourselves available to
Claire Rutan as quickly as possible. assist others in your communities,
It is the expressed policy of the TMA
There are many people who apply for states and countries.
not to share this information for any
these positions, and the camp cannot
commercial purposes. The vast ma-
accept everyone.
jority of our members are listed in
the directory. This designation was
The Volunteer application can be
made when you first completed the
found from the following link:
Page 90 The Transverse Myelitis Association

Support Groups
horrible. I did regain some feeling and
motion in my arms and my left leg, but
I was unable to stand or even sit up. I
certainly could not walk. My bowels
and bladder shut down. And I was
Worldwide Devic’s / Canada amazed how much the muscles dete-
riorated in my right leg in that short
Neuromyelitis Optica Dan Kilborn
time. It still is noticeably smaller then
Support Group On March 24th 2005 I went to work
the left.
Gayle and Johnny Ashby like every other day, although I felt
www.devic.org.uk I remember asking the neurologist
like I had slept wrong. My neck was
what were my chances of walking
feeling a little sore. As the day went
The Worldwide Devic’s / Neuromye- again. The best he could offer was that
on, I started to become weaker, my
litis Optica Support Goup has been I would improve from where I was
right arm was feeling numb and I
working on a Constitution with the now. But he couldn’t tell me how far
was experiencing some chest pain.
help of Lew Gray from the TMA here I would recover. He couldn’t guaran-
Being a 44 year old, slightly over-
in the UK in order to establish our tee that I would walk again. I didn’t
weight and male, I thought, “heart
charity status. We have also begun to take this too well. I went through a
attack.” I drove myself to our local
post the latest information by the lead- whole range of emotions, anger, de-
hospital here in High River. By the
ing specialists on NMO in the UK, Dr. pression, frustration. Some of this was
time I got there, 2-3 minutes later,
Jacob and Dr. Boggild, on our website: due to the prednisone. All I wanted to
my legs were starting to feel numb.
www.devic.org.uk. do was hide in my hospital room. I
The emergency room actually started
didn’t want to see anybody, talk to
treating me for a heart attack until I
We are continuing to collect informa- anybody, and I didn’t want to live if I
was asked to stand for an x-ray. My
tion with the Worldwide Devic’s Sur- couldn’t walk. Thankfully, I have an
legs gave out and I was no longer
vey. One purpose of this project is to incredibly strong wife, and as I found
able to stand. By 11am that morning,
promote and encourage research on out, some very great family and
I was paralyzed from the chest down.
NMO. We have thus far collected in- friends. They never gave up on me.
I was still experiencing severe chest
formation from 150 people with NMO. They came day after day and some-
pain. The emergency staff gave me
We are ensuring the anonymity of re- times just sat there even when I would-
morphine and shipped me off to a
spondents and the information is being n’t say a word to them. They were the
hospital in Calgary, Alberta. Even at
kept confidential. The survey has been driving force through my rehabilitation
that point, I wasn’t feeling too con-
translated into German and we are at the start.
cerned, thanks to the morphine and
looking for help to translate the survey the fact that people just don’t become
into other languages. If you can help I spent three months in the hospital in
paralyzed for no apparent reason. I
with this project, please contact Gayle rehab. The first two months were
fully expected to get some medica-
via the website. slow. I saw little or no improvement.
tion and be out of the hospital in a
The end of the second month gave bet-
couple days. Very shortly, that no-
Our chat room is now available and all ter results. I could walk a bit with a
tion would be crushed.
are welcome. It is so empowering to walker. By the end of the third month,
be able to have these worldwide dis- I could walk with two canes; not very
The first two MRIs showed nothing.
cussions between people who have far, but at least I could walk. This gave
I then went through a number of
NMO. The link to the Worldwide me renewed hope and determination. I
tests, doctors, specialists, trainees;
NMO / Devic’s Chat Room is: http:// continued rehab locally in High River,
but nobody could tell me what was
www.devic.org.uk/chat.php. at the pool, the gym, and physical ther-
going on. It was three days later and
apy.
the third MRI that found inflamma-
The Worldwide Devic’s Support tion on C4 and T1. At this point, I
Group provides information and sup- When I got home, I spent the first
was officially diagnosed with Trans-
port to people who have NMO and three months or so getting around on
verse Myelitis. What is Transverse
their family and caregivers. We are an electric scooter. My right leg was-
Myelitis!??!! Then came the predni-
working closely with the TMA to en- n’t good enough to drive. I have im-
sone; two rounds of it, 1250 mg a
sure that people have access to the in- proved to the point were I can walk
day for five days each time. Talk
formation and support they need to without canes, maybe 10-15 blocks;
about mess a guy up; that stuff is
enough that I can go to the store, shop-
The Transverse Myelitis Association Page 91
ping, movies, things like that. I walk a years to an incredibly strong lady, to all of the extra practice time, the
little like a drunken sailor. My right Connie. I have a great daughter, Kel- Provincial Competition I had just been
leg, as well as my core, is still weak, sey, 15 years old. We live in High to and the fact that I was still working
and I sometimes have trouble with bal- River, Alberta, Canada; that’s 30 and needed to make sure that my class
ance. I am able to drive now, although minutes south of Calgary Alberta, the was covered during my absence. That
I am a two footed driver. I can’t move home of the famous Calgary Stam- day, the 17th, after shopping, I came
my right leg fast enough between the pede. home and felt drained and had some
gas and brake. burning pain across my shoulder
I look forward to hearing from any- blades. I dismissed it, thinking it was
I did have to give up my career as a one who is interested in being part of either from a fall I took in skating, or
Heavy Duty Mechanic. I’m just not this support group, anyone that is having had to pick up a student of
strong enough and mobile enough to interested in helping out, anyone that mine a couple days before, or a combi-
do that anymore. I am currently in a just wants to talk about this thing nation of both. As the night wore on,
temporary position as a Fleet Supervi- TM. I guess if I have a dream or a the pain increased. The next morning,
sor, where I work, but it has not been vision or a goal (whatever you want the 18th, I woke up in such bad pain
finalized yet. I seem to be able to han- to call it), it would be to see a sup- that I wasn’t sure I should go to work.
dle that job well. It is a good mix be- port group in every province, an op- I thought to myself that if it was still
tween desk work and walking. I do portunity for people to connect with bad at the end of the day, I’d go to the
get stiff, if I sit too long. each other, to laugh, cry, complain, hospital. I made it to work and that’s
rejoice, care and support each other. where my body made the decision as
For the most part, I am doing pretty to what I would do. My boss brought
well. I continue to have a loss of sen- Dan Kilborn me to a clinic where, by the time a
sation from the chest down and it gets 415 6th Ave SE doctor saw me and examined me, I
worse the lower it gets. My feet are High River Alberta became paralyzed in my left leg. I was
the worst; very little feeling in them. I Canada then brought to the ER of the local
do feel blessed to have recovered to T1V 1H9 trauma hospital.
this point and any gains from here on I (403)652-4347
consider a bonus. [email protected] Over the course of the day, I had blood
drawn, X-rays taken and an MRI of
When I came home from the Hospital, Canada my brain and spine. I became para-
I searched locally for some kind of Marieke Dufresne lyzed from the chest down and lost the
support group with no luck. I was ac- ability to urinate. That night a neu-
tually surprised to find so little infor- I would like to introduce myself to rologist came and told me that I most
mation (around my area anyway) on the TMA community. In 2004, at the likely had TM. Over the next few
TM. I did finally find and join the age of 28, I was actively participat- weeks, I was tested for a variety of
TMA a while ago. After reading ing in figure skating. I was compet- other diseases/disorders, and all came
Sandy’s article in the last newsletter, I ing in Canada as well as in the back negative. I was treated with IV
decided to try and get a support group United States in the adult division steroids, oral steroids and IVG. I
started here in Canada. I am both and working hard towards the up- slowly regained the ability to move my
nervous and excited to get this going, coming Canadian Adult National right leg, and to be able to roll over
but I look forward to seeing this group Championships to be held in British and sit up. I spent ten weeks in the
start and grow. Columbia. When I wasn’t skating, I hospital and was then moved to a reha-
was working as a preschool teacher bilitation hospital where I spent an-
I believe there is a real need for sup- and figure skating coach. All this other eight weeks as an in-patient. I
port groups, for people that go through came to an end on March 18th. then spent another year and a half as
such life changing illnesses. Although an outpatient. I went back to work as
our family and friends are a huge sup- I had been at work the day before a preschool teacher almost six months
port, there is also great help, comfort and had gone shopping afterwards to the day after I got TM. I was in a
and healing from connecting with oth- for some last minute items I would wheelchair and glad to be back doing
ers that can relate to what we are going need for my trip to BC the following what I loved.
through. weekend. The previous ten days, I
had been feeling very tired and In the fall of 2005, I went back to
My name is Dan Kilborn. I am 45 stressed. I figured that this was due school to become a nurse. I made
years old and have been married for 18 many friends while in the hospital with
Page 92 The Transverse Myelitis Association
nurses, doctors, PT/OT; and they in- to encourage and assist organizing group in my area. He said, “Great!
spired me to go for it. I have worked similar gatherings in Wisconsin and We’ve needed someone to get this
very hard in PT/OT to re-learn to walk Minnesota. If you are interested, started up there; we don’t have support
using a cane and wearing a long leg please contact us via the contact in- groups in either Minnesota or Wiscon-
brace on the left leg. Despite being on formation provided at the end of this sin. Why not do both?”
various medications for neuropathic article. Below, we have also pro-
pain, spasticity and low blood pres- vided a brief introduction of our- So, here I am after jumping in feet first
sure, I am now in my second year of selves. We look forward to hearing and eyes closed, hoping and praying
nursing school and love it. It has been from other TMA members in the for everyone’s patience as I’m learning
something I had wanted to do for Wisconsin and Minnesota area! on the run, so to speak. Mr. Miller
many years, but never had the courage asked for my goals, but I don’t know
to do. After spending so many months Lynn Seifert as I have any yet as such. I have
in the hospital, I have decided that it’s hopes. I hope to have open lines of
now or never. I am also an active My name is Lynn Seifert. I’m 47 communication amongst all of us al-
member of the TMA message boards, years old. My wife’s name is Jodie ready diagnosed and those yet to be
and have recently become a moderator and we have four children (Erin, diagnosed. I hope there are many of
at the request of Jim Lubin. I enjoy Ryan, Emily and Evan), one dog us willing to be contacted by those
helping newly diagnosed members and (Hannah) and one cat (Mittens). I recently diagnosed who need someone
invite all of you to come and join us, if live in Pepin, Wisconsin, which is a to talk to and tell them we are going to
you have questions, concerns, or just small town with a population of be ok. We have all learned to cope,
feel like reading what others are ask- around 900 on the Mississippi now let’s help others. I hope to, at the
ing. River. I am a barber three days per very least, meet all of you in Minne-
week and a carpenter three days per sota and Wisconsin. I hope to have the
I will be working with Dan Kilborn to week. I was diagnosed with TM knowledge, patience, communication
get a support group started in Canada. about nine years ago. I woke up one skills, and humor to do this job the
We hope to get many of you involved morning with both legs asleep from justice it deserves. Thank you for this
in helping us develop this important the knees down. Jodie said I was opportunity.
network to provide information and walking like Frankenstein’s mon-
support. ster. I was checked at the Mayo Dean Peter
Clinic in Rochester, MN, and treated
Marieke Dufresne with an IV drip of Solumedrol for I am a banker by trade. I was diag-
82 Somerville Ave three days. It worked but I’ve been nosed in early 2004 and have 2 lesions
Westmount, Quebec left with decreased sensitivity in my that apparently occurred at the same
H3Z 1J5 legs from the knees down to my toes. time. Problems include pain in my left
(514) 489-0471 I have the most trouble feeling my leg, weakness, extreme fatigue, blad-
[email protected] toes. I don’t always know where my der does not function sometimes,
feet are unless I’m looking down spasms in legs and hands and perma-
while walking and I fatigue eas- nent numbness in both hands. Like
Minnesota and Wisconsin ily. My lower legs hurt worse as I others, I have good and bad days.
Lynn Seifert, Dean Peter and Darian tire out, but I am still working. Current treatment includes Rebif,
Vietzke weekly IV’s, Cellcept, amantadin and
Just a few months ago, Jodie said she physical therapy.
A Wisconsin and Minnesota TM sup-
found the TMA website on the inter-
port group is being organized by Lynn
net and requested their newslet- Darian Vietzke
Seifert, Dean Peter and Darian
ter. After reading Stephen Miller’s
Vietzke. We are all excited to begin I am married to Amy and we have
article on support groups, I looked
helping individuals with TM and their three children, Erin (age 11), Jason
for a support group around the Mayo
families in the Wisconsin and Minne- (age 6), and Michael (age 3). Our son
Clinic area in the directory. I could
sota areas. For example, a small group Jason was diagnosed with TM at the
not find one. After much considera-
has already begun to meet the last Fri- age of 10 months. During the initial
tion, and many discussions with
day of every month at a restaurant in onset, Jason spent five weeks in the
Jodie (for the first time as I’ve been
Inver Grove Heights, MN (near Min- Minneapolis Children’s Hospital. The
unwilling to discuss my situation
neapolis and St. Paul) to share infor- onset was between C2 and C7, which
with anyone until recently), I con-
mation and fellowship. We would like has left him with little movement in
tacted Mr. Miller to start a support
The Transverse Myelitis Association Page 93
his arms and no movement in his One Wednesday morning, just a little group is just getting started, so I would
hands or legs. While life has been a over two years ago, I woke up think- love to have your suggestions and in-
challenge for Jason and our family, we ing it would be a day like any other. put. Please feel free to contact me at
are very blessed for the support and A couple of hours later, I started feel- any time.
friendships we have gained in the ing poorly and by that afternoon, I
TMA and from many other individu- was in the emergency room with an Rhonda Loggia
als. We have learned a great deal from indescribable pain in my chest. The 303 Wildhorse Canyon Dr.
others and wish to provide the same doctors did all of the standard testing Wildwood, MO 63005
support to other families. We have for heart trouble. Then they sent me (636) 537-8471
been helped by many individual’s sup- home after the markers were nega- [email protected]
port and information on equipment, tive with an admonition to go and
therapies, and in how to adapt our visit my regular doctor the next day. Nevada
house, as well as just understanding By the time I saw my doctor, I had Mary Wolak
what we are going through. Jason is a no feeling from the chest down. She
happy and energetic bright young boy did the standard x-rays and then sent Greetings from Las Vegas, Nevada!
that likes to do many boy things. We me home. On Monday I went back My name is Mary Wolak. I have been
look forward to meeting more indi- to the emergency room and the ER married for 27 years to my terrific hus-
viduals and families as the support doctor said that he would not let me band, Walt, and I have two grown
groups begin to form in the Minnesota go until they finally figured out what daughters, Emily and Elizabeth, and a
and Wisconsin areas. the problem was. Many hours and 14-year-old pug named Lucky. I suf-
tests later, I heard the words MS and fered an acute onset of transverse mye-
Contact Information then finally TM. They started IV litis in the C6-7 area of my spinal cord
steroids and sent me home three days in May, 1986 at the age of 31. Yes, it
Mr. Lynn Seifert later with lots of pain and tons of
PO Box 268 was almost 21 years ago. It left me
questions. virtually a quadriplegic. I spent 2 ½
Pepin WI 54759
Home phone: (715) 442-5205 months at UMC, building strength and
No one could tell me what to expect learning to walk again. I never re-
Work phone on Thursdays and next and no one could tell me if I
Fridays: (715)442-5122 gained the use of my fingers, though,
would get any better. I read every- and have no feeling from the chest
E-mail: [email protected] thing I could on the internet and the down. This also means that I have no
Mr. Dean Peter TMA website. The TMA website pain. Most times that’s a good thing.
Home phone: (651) 492-0074 provided the most helpful informa- At least the weakness stopped short of
E-mail: tion. There I found others who had my diaphragm, so I can breathe on my
[email protected] been through what I was going own.
through, and I found insight into
Mr. Darian Vietzke what I could reasonably expect for TM wasn’t diagnosed until I’d been in
2345 132nd Ave. NE the future. I found others with the the hospital about eight weeks. I had
Blaine, MN 55449 same plight and same symptoms. the first spinal MRI at Valley Hospital
Home phone: (763) 755-3515 Most of these people had more diffi- and a doctor newly transferred from
E-mail: [email protected] cult symptoms than I did. The road Texas made the diagnosis. No one had
to recovery is hard and it’s uncertain. been able to tell me much about this
With the help of others and from an- condition. I always felt I was all alone
Missouri swers I found on the TMA website, I until I discovered the TMA a few short
was able to get my life back on track. years ago. When I received the first
Rhonda Loggia
There remain unanswered questions. newsletter, I cried while reading oth-
My name is Rhonda Loggia and I have ers’ stories. Here were people experi-
After two plus years, I am 95% re- encing what I’d experienced and what
TM. I am one of the lucky ones. I can
covered. I want to start a Missouri I am experiencing! I’ve always just
still walk and live an almost normal
Support Group. I have always plugged along through life doing the
life, that is, of course, except for the
looked to see if there were others best I can. I was involved in Girl
lingering pain and the fear that one day
from Missouri who had joined the Scouting for a dozen years, volun-
I will have a second occurrence.
TMA, and I would like to start the teered as much as I could at my daugh-
These have become for me a new nor-
group so that there is a contact point ters’ schools, and even worked part-
mal that I have learned to accept.
for those of us in this state. This
Page 94 The Transverse Myelitis Association
time for seven years at a public library. be able to speak to someone knowl- Yet another two weeks later, both his
That was until three months ago. I’ve edgeable on the topic of Transverse legs were useless and Andre was a
been having a problem falling. My Myelitis (TM). He was delighted to very, very sick man. He could, liter-
legs just zap out. I just keep getting up hear that Alet, my daughter, fully ally, not muster enough energy to lift
and going on. My walker is my new recovered from TM at the age of 11 his head from his pillow. His family
best friend! in 2000. She recovered completely feared for his life as he couldn’t eat.
from the disease within three months. Within a month he lost a shocking 15
I am really interested in starting a sup- Andre also expressed his apprecia- kg. Once the high temperature and
port group in Nevada. What a differ- tion to me and Jenny Moss for man- pain was brought under control, he
ence that would’ve made in my life all aging the TM Association of South was admitted to the Life Pasteur Reha-
those years ago. There ARE people Africa, and that my daughter, for bilitation Centre and seven months
out there who understand and care!! one, had recovered from TM seven later he is still visiting the center daily.
Please feel free to contact me anytime. years before. Andre only sees his precious wife, Li-
zelle, and 5 year old son, Andre-Hugo,
Mary Wolak In his heyday, Andre played no less on Saturday evenings, when they can
10110 W Tropical Pkwy than 66 test matches for his famous spend quality time together in their
Las Vegas, NV 89149 national rugby team, the Springboks. family home. Lizelle is expecting their
(702) 234 – 9327 By just looking at him, one realises second child soon. They will call her
[email protected] that Andre is a very tall and well Anebel.
built man – he is a super sportsman
South Africa: famous former and physically active person. It is That visit took place just before
quite obvious why the South African Christmas. Andre phoned me last
Springbok Rugby player struck
media labelled him the “Iron Man.” week with some wonderful news. Vo-
down by Transverse Myelitis He could sprint 40 metres within dacom, one of the South African mo-
only 5,29 seconds. Once he broke a bile phone service providers, offered
On the 17th of December 2006, Andre rib in a rugby match against Austra- him an incredible sponsorship to go to
Venter sat in a wheelchair on the ve- lia, but continued to see the game any place in the world for rehabilita-
randa of a tiny restaurant right next to through. He also had no problem tion from TM. That sent me running.
the Life Pasteur Rehabilitation Centre with jogging 3km in 10 minutes and I immediately contacted our friend and
in Bloemfontein, South Africa. I had 18 seconds. very helpful Sandy Siegel, President of
to drive 500km to meet him. With The Transverse Myelitis Association,
family and friends surrounding Andre, Andre then told me his TM story in who suggested that Andre consider
I approached them and introduced my- extraordinary step-by-step detail; The Kennedy Krieger Institute. He
self. Andre was completely relaxed how TM turned his entire life upside also sent me the link to Dr. John
and conversation came easily. With down and the extent to which it McDonald III, who was Christopher
my cheap little camera, I took a few changed his life. He admitted that Reeve’s doctor. According to Sandy,
photos. His mother stood with her arm the last six months of his 36 year life Johns Hopkins and Kennedy Krieger
around my middle for one of the pho- was the toughest time, as he was now are affiliated and are next to each other
tos and his wife smiled brightly for the paralyzed from his chest downwards. in Baltimore, Maryland.
“just-before-Christmas” photo. Andre
and I had spoken over the phone on a He related that on Saturday, the 1st of At this time we should now take hands
few occasions; no easy task as he is a July 2006, he felt excruciating pains and help this sportsman to receive a
famous sportsman in South Africa. in his back. TM was only diagnosed world class rehabilitation program.
after he visited the Bloemfontein Like all TM patients, Andre desper-
Earlier I tried to reach Andre. That Hospital for the third time in two ately wants to walk again…
was quite a difficult task in itself. At weeks. By the second day after his
last, I reached his personal assistant in admission, his left leg started to Ms. Mart Uys
Bloemfontein. She is a friendly lady weaken significantly and was com- Co-Chairperson (together with Jenny
and gave me his personal e-mail ad- pletely paralyzed and without feel- Moss) of the South African Transverse
dress. I e-mailed him to inform him of ing. Two days later, his right leg Myelitis Support Group
the South African Transverse Myelitis behaved in the same manner and he [email protected]
Support Group. A few days later, An- developed a dangerously high tem-
dre phoned me and we spoke for an perature.
hour or more. He felt very relieved to
The Transverse Myelitis Association Page 95
UK TM Society: Members anywhere in Europe can was. With my numbness, tingling,
donate to TMS using credit cards. gait, pain, and other sensory issues
News from Europe
These donations will help us with would come an AVM (arteriovenous
Lew Gray
costs of TMA Journal and Newsletter malformation) that would be inoper-
distribution, the costs of the 2007 able until 2000! This was followed by
2006 was a very good year for the UK
Conference, as well as other pro- a couple of brain hemorrhages, an in-
TM Society. The Support Groups in
grams and activities. The donation is operable brain aneurysm, and seizures.
Telford, Scotland, London and Poole
in UK pounds sterling, but your
continued to meet successfully with
credit card company will convert it to I had my 2nd and 3rd brain surgeries in
good turnouts, and new groups are
Euros automatically. If you want to 2005. The final surgery, after moni-
starting up in Berkshire, Southwest
help, please go to toring, was for the seizures. I had a
and Manchester. Still many members
www.myelitis.org.uk and click on stroke during the surgery. Yes, I
have never been able to attend a sup-
‘Make a Donation.’ would still have the surgery knowing
port group and there are more areas of
what I know today, because faith and
the country we want to cover.
Following the successful start-up of hope are a healthy force! I can live
the German TM Support Group, it is with TM and I can rehab from a stroke
In October the Poole Group held our
good to see Dan Bucataru is trying to and any lasting effects. Seizure-free is
first meeting with the local neurolo-
start a Romanian Group. We still a good, hopeful feeling! If we don’t
gist, Dr. Hillier, who spoke and an-
need local translators, especially in have hope, we can’t have growth! I
swered lots of questions from mem-
Italy, Spain and Portugal. have seen many miracles in my life. I
bers. The question and answer session
was a labor and delivery nurse. A
is available in the Poole Minutes. You
Any members with Devic’s Disease mere man has held my brain in his
can also view Dr. Hillier’s slides.
(Neuromyelitis Optica or NMO) hands; on more than one occasion!
Both are available on our web site:
should check out Gayle’s Place at There is always hope! For if G-d
www.myelitis.org.uk – go to the Sup-
www.devic.org.uk brought you to it, He will see you
port Group link and then to Poole Min-
through it!
utes.
At least three kids from UK and one
Dr. Douglas Kerr, the Director of the
from Denmark are attending the Vic- Washington and Oregon
tory Junction Gang Camp TMA Bud Feuerstein
Johns Hopkins TM Center has agreed
Family Week in August in North
to visit London. We have invited a
Carolina USA. We know that they The Washington and Oregon TM Sup-
couple of eminent British neurologists
will have an excellent time! port Group met for the first time in
to join him to speak to us at our first-
ever UK TM Conference. The event is 2006. There were 12 people who at-
Lew Gray
schedule for Saturday 13th October tended. It was great to be in a room
UK TM Society with other people who have TM. We
2007. We also hope to have funds
[email protected] shared our stories and Paula told us
available to assist members with travel
costs to London. More details will be about the Rare Neuroimmunologic
coming soon by email to all European Virginia Symposium that was held in Baltimore
members; so please keep your email Pamela New this past July. We are planning to
address up to date! have quarterly meetings and will try to
There is always hope! get guest speakers for some of our
In addition to a superb Committee and meetings. We are hoping to have a
a close-knit group of local leaders in Without hope, we have nothing. As good support network in Washington
UK, we also are lucky to have many doctors order lab tests, after perform- and Oregon. We need for you to get
enthusiastic members who have organ- ing numerous physical exams, still involved.
ised fundraising events, including providing us with no answers, we
must maintain some semblance of Hope is everything; don’t give up!
Sally’s Irish Night (over £1100!), cho-
ral concert in Westminster, sponsored hope; for without it we have nothing
Bud Feuerstein
runs in Gateshead, London and Brigh- left.
14241 112th Ave NE
ton, and corporate donations. Kirkland, WA 98034
I think back often to May 1997; life
(425)398-4365
Online donations are now working seemed so “normal” way back then.
[email protected]
thanks to Jim Lubin’s excellent work. I learned on June 2nd that there never
Page 96 The Transverse Myelitis Association
Support Group Leaders James G. Jeffries Michigan
27 E. Benjamin St. Lynne Myers
All of the TMA Support Groups are for Hernando, FL 34442 22155 20 Mile Road
people who have any of the neuroimmu-
(352)249-1031 Olivet, MI 49076
nologic disorders. We encourage every-
one to get involved, including family [email protected] [email protected]
members, physicians and other medical Georgia (269)789-0452
professionals. Charlene B. Daise Minnesota
Devic’s Syndrome/NMO Support 3398 Columbia Crossing Drive Karen Nopola
Group DeCatur, GA 30034 5537 37th Ave. S.
Gaylia Ashby (404)289-7590 Minneapolis, MN 55417
43 Reservoir Road [email protected] (612)270-1122
Ruislip, Middlesex, HA4 7TT Idaho [email protected]
United Kingdom John Craven Dean H. Peter
[email protected] 889 N. Watson Way 10930 Eagle View Circle
Alaska Eagle, ID 83616 Woodbury, MN 55129
Patrick & Jennifer Lemay 208-939-7968 (651)492 0074
4272 Chelsea Way [email protected] [email protected]
Anchorage, AK 99504 Illinois Darian Vietzke
(907)274-4180 Nicolette Garrigan 2345 132nd Ave. NE
[email protected] Chicago Blaine, MN 55449
California (773)774-6554 (763)755-3515
Deborah Capen [email protected] [email protected]
P.O. Box 20840 Jeanne & Thomas Hamilton Missouri
Hemet, CA 92546 1509 No Hickory Ave. Rhonda Loggia
(951)658-2689 Arlington Heights, IL 60004 303 Wildhorse Canyon Dr.
[email protected] (847)670-9457 Wildwood, MO 63005
Cindy McLeroy [email protected] (636)537-8471
11602 Eudora Ln. Kentucky [email protected]
Garden Grove, CA 92840 Andy Johnson Nevada
(741)638-5493 424 Transylvania Park Apt. 3 Mary Wolak
[email protected] Lexington, KY 40508 10110 W Tropical Pkwy
Northern California (859)552-5480 Las Vegas, NV 89149 – 1243
Judy Melcher [email protected] (702)645-3657
(209)334-0771 Maine [email protected]
[email protected] Colleen Graff New England Tri-State Area
San Diego P.O. Box 7 Krissy Zodda
Christine Davis Greenville, ME 04441 8A Lindsay Street
[email protected] [email protected] Hudson, NH 03051
Maryland (603)595-8917
Colorado
Alan & Kelly Connor [email protected]
Lamar and Danise Burkes
12002 Singing Winds St. 117 Foxhound Dr. New York
Parker, CO 80138 Glen Burnie, MD 21061 Pamela Schechter
(720) 851-8520 (410)766-0446 Apartment 7M
[email protected] [email protected] 41-10 Bowne St.
Massachusetts Flushing, NY 11355
Florida
Leslie Cerio (718)762-8463
Brad Highwood
(781)740-8421 [email protected]
1961 S.E. Millbrook Terrace
Port St. Lucie, FL 34952 [email protected]
(772)398-3340
[email protected]
The Transverse Myelitis Association Page 97
Shannon O’Keefe Puerto Rico Wisconsin
75 Orchard Creek Cir. Yvonne Lugo Del Valle Lynn Seifert
Rochester, NY 14612 (787)312-9711 P.O. Box 268
(585)330-1125 [email protected] Pepin, WI 54759
[email protected] Tennessee (715) 442-5205 – home
North Carolina Mary Troup [email protected]
Paul Stewart 1734 McAdams International
12209 Danby Rd Memphis, TN 38108 Argentina
Pineville, NC 28134 (901)213-1698 Marina Lopez
(704)543-0263 [email protected] [email protected]
[email protected] Texas Australia
Ohio Robert W. Cook Ian Hawkins
Kathleen Karoly 211 Magic Oaks Dr. P.O. Box 5651 West End
750 Ninth Street Apt. H Spring, TX 77388 Queensland, 4101
Bowling Green, OH 43402 (281)528-8637 Australia
(419)354-7316 [email protected] 61 7 3206 4618
[email protected] Cossy Hough [email protected]
Stephen J. Miller 2502 Twin Oaks Dr. Errol White
1717 State Rte. 72 South Austin, TX 78757 6 James MacCourt
Jamestown, OH 45335 (512)420-0904 Narangba, QLD, 4504
(937)453-9832 [email protected] Australia
[email protected] Barbara Lamb 61 07 3886 6110
Margaret Miller 419 Circle Drive [email protected]
1336 First Ave. Arlington, TX 76010 Canada
Columbus, OH 43212 (817)460-2630 Marieke Dufresne
(614)486-2748 [email protected] 82 Somerville Ave,
[email protected] Virginia Westmount, Qc, H3Z 1J5
James E. Tolbert Agnes Killough Canada
2911 Old State Rte. 32 #7 PO Box 24 (514)489-0471
Cincinnati, OH 45103 Pungoteague, VA 23422 [email protected]
(513)724-1940 (757)422-4024 Dan Kilborn
[email protected] [email protected] 415 6th Avenue S.E.
Linda Garrett Pamela New High River, Alberta
3670 Millers Lane 106 Indiana Lane Canada, T1V 1H9
Duncan Falls, OH 43734 Williamsburg, VA 23188 (403) 652-4347
(740) 674-4100 (757)565-6461 [email protected]
[email protected] [email protected] Denmark
Pennsylvania Washington & Oregon Mette & Thomas Nybo Jensen
Morgan & Pamela Hoge Bud Feuerstein Kalhavevej 16
599 Justabout Road 14241 112th Ave N.E. 8763 Rask Molle
Venetia, PA 15367 Kirkland, WA 98034 45 76 90 50 75
(724)942-3874 (425)398-4365 [email protected]
[email protected] [email protected] Germany
Sue Mattis Mike Hammond Ursula Mauro
7078 Garfield Ave. 4924 66th Ave N.E, Neugasse 32
Harborcreek, PA 16421 Marysville, WA 98270 Neuried
(814)899-3539 [email protected] or Baden-Wurttemberg, 77743
[email protected] [email protected] Germany
Home: (360)658-5878 07807 3154
Cell: (425)922-6622 [email protected]
Page 98 The Transverse Myelitis Association
Ireland Sweden are like our family, we have several
Ann Moran Ulrika Pettersson pieces of equipment that have been
Derry Gorman, Westport Bredmansgatan 4B 2 TR outgrown by our son Jason, who has
Co Mayo, 098-26469 Uppsala, 752 24 had TM since ten months of age. Ja-
Ireland Sweden son is currently five years old and is
098-26469 [email protected] doing well. We have donated some of
[email protected] United Kingdom his equipment in the past to other or-
New Zealand Lew Gray ganizations, but we are glad to now
Steve & Alison Alderton 35 Avenue Road, Brentford have another option to share this
64 3 3857274 Middlesex, TW8 9NS equipment with others affected with
[email protected] United Kingdom the neuroimmunologic disorders and
020 8568 0350 their families.
Dyllice Eastwood
152 Amreins Road [email protected]
Our family and others on the Board are
Taupaki RD3 Henderson Sally Rodohan in the process of posting equipment,
Aukland, New Zealand, 1230 #1 Crathorne House Oak Lane but we encourage all of you to begin to
649 8109807 East Finchley list your equipment as soon as possi-
[email protected] London, N2 8LY ble. The more equipment that is listed,
Jennifer Murray United Kingdom the more individuals in our community
76A Tiakata Road 020 8883 2721 will be helped. If you have any ques-
Te Atatu Peninsula [email protected] tions as you begin to use the program,
Aukland, New Zealand 1008 Margaret Shearer please use the help link on the equip-
09 834 5019 26 Lichtenfels Gardens ment exchange web site.
[email protected] Prestwick
Ayrshire, KA9 1EP Thank you for your support,
Romania
Scotland Darian Vietzke
Dan Bucataru
Mecet Nr. 39a, Sect.2 01292 476 758
Bucharest [email protected] TMA Equipment Exchange
Romania Geoff Treglown Instruction Sheet
(021)252-5936 Ambleside
[email protected] 01539 434 677 The TMA equipment exchange is ex-
[email protected] plicitly for exchanging free equipment
Alina Paraschiv
except for the cost of shipping only.
C-Tin Radulescu Motru
How the cost of shipping is divided is
NR3, BL. 37A, SC
agreed upon by the individual(s) do-
Bucharest, Romania 040361
722 398 993
The TMA Equipment nating the equipment and the receiver
[email protected] Exchange (s). Selling of an item is explicitly dis-
allowed.
South Africa
I am pleased to announce a new pro- To list an item(s) to exchange, first
Jenny Moss
gram that is being offered on the follow the on-line instructions to regis-
PO Box 3865
TMA Web site. It is called the ter as a new user and then use the on-
Tygervalley
Equipment Exchange. You will see line instructions on the Member Area
Cape Town, 7536
the link to the Equipment Exchange tab to list your item(s) to exchange.
South Africa
on the column of links on the main Note that several fields can be com-
082 928 3000
page of the TMA web site. I have pleted after an item is exchanged.
[email protected]
been assisting the TMA Board in de- This information is being requested in
Mart Uys veloping and offering this program to order to gather statistics to request
397 Central Park Ave. all individuals affected by TM, grant funds to assist in covering ship-
Lynnwood, 0081 ADEM, NMO and ON and their ping costs when exchanging items in
South Africa families. The program is intended to the future.
012-361-7671 assist our community in exchanging If you are looking for a particular item,
[email protected] surplus equipment with each other follow the on-line instructions to view
for the cost of shipping only. If you
The Transverse Myelitis Association Page 99
current ads. Once the item is found, seen the photograph of the person cations between our members.
contact the donor (lister) using the on- holding up the Tower of Pisa. Imag-
line instructions to discuss specifics of ine a blue TMA band on this per- The vast majority of the members
the item, discuss how to exchange the son’s wrist. It would be great if we listed in our directory have Transverse
item if it matches what you are looking had photographs of our members or Myelitis. It is so important that people
for, and how the cost of shipping is to their family members with the Great with the even rarer neuroimmunologic
be managed. Pyramid in Egypt, or the Eiffel disorders have an opportunity to find
Any item inappropriate for exchanging Tower or the White House in the each other; and they are unable to do
will be removed by the site administra- background. You get the “picture!” so just by using the directory. I began
tor. To report any item that is inappro- Any background will do; we would compiling lists of people with these
priate, please send an e-mail to: love to see you wearing the wrist- other disorders. When a person signs
[email protected] band in the photograph. We will be up for membership in the TMA using
Items exchanged via this site are not posting many of your submittals on the electronic form, and they identify
tax deductible. Any questions regard- our website. that they have a disorder other than
ing taxes should be directed to your TM, I have asked them to consider be-
tax accountant. TM touches lives all over the globe ing added to the list. I only share these
and this is a simple, tangible way to lists with people who are willing to be
If you have items you wish to sell and show we are all connected. added to the lists. I currently have lists
donate a percentage to the TMA, compiled for:
please click on the related link on the To submit a photo, e-mail it to wrist-
front page to use eBay Giving Works. [email protected] or send via post 1. Acute Disseminated Encephalomye-
If you have any comments or ques- to: litis (ADEM);
tions regarding the TMA Equipment 2. Neuromyelitis Optica (NMO) or
Exchange, please send an e-mail to: TM Wristband Photos Devics disease;
[email protected]. Thank you. 1717 State Route 72 South 3. Recurrent Transverse Myelitis;
Jamestown, OH 45335 4. Transverse Myelitis with SLE
USA (Lupus), Sarcoidosis or Sjogren’s
Disease;
Where in the world are the We can’t wait to see you! 5. Transverse Myelitis or NMO with
HIV; and
TMA Wristbands? 6. Optic Neuritis.

As part of the TM Awareness cam- If you are interested in being added to

paign, we are collecting photos of peo-
ple from around the world wearing the
ADEM, NMO, ON, one of these lists and then periodically
receiving a copy of the list, you can
signature blue TMA wristbands. If Recurrent TM, TM with send me your contact information ei-
you would like to send us a photo- Lupus, Sarcoidosis, ther by email or through the postal ser-
graph of you, your family, or friends
we would love to have it for our col- Sjogren’s Disease and vice. Please send me your full name,
complete postal address, phone num-
lection. HIV: Finding Each Other ber and email address (if you have
to Share Information and one). Be sure you clearly identify to
Here’s is what we would like for you which list you would like to be added.
to do. Please have a photograph taken Support
of you or a family member and be sure Sandy Siegel
that the wristband is clearly visible in The Transverse Myelitis Association 1787 Sutter Parkway
the frame. Tell us who you are and helps to create networks of people Powell OH 43065-8806
identify where the photograph was from around the world to share infor- USA
taken. If you live by, or will be travel- mation and support. Jim is busy cre- [email protected]
ing to, a famous landmark, it would be ating new ways to accomplish that
great to include these places in the task every day of the week. From
photograph. When you take the photo- the Transverse Myelitis Internet Club
graph, please be sure that the landmark to bulletin boards to support groups,
appears in the background. We en- we are constantly seeking new vehi-
courage you to be creative! We’ve all cles for facilitating these communi-
Page 100 The Transverse Myelitis Association

Fundraising and Awareness

how to pack the phones and how to
send them. The value of the cell
phone will be donated to The Trans-
verse Myelitis Association. You will
be making a valuable donation to your
Association and helping the environ-
Helping to Fund the porters searching twice a day could
generate $730 a year, 1000 support- ment at the same time!
Work of Your TMA ers - $7,300, and 10,000 supporters
searching twice a day could generate TM Awareness Wrist
The TMA does not charge member-
$73,000! Bands
ship fees. We operate exclusively on
With your help, GoodSearch can Show your support for The Transverse
the basis of the generous and voluntary
generate donations, at no cost to you Myelitis Association and help raise
support of our members. There are
that will help fund the goals of The awareness of rare neurological disor-
numerous ways for everyone to help
TMA: ders of the central nervous system.
support the TMA, even if you are not
http://www.goodsearch.com/
in a position to make a financial con-
?charityid=607112 These wrist bands are made with
tribution. Please consider getting in-
volved in one of our fundraising ef- 100% Synthetic Silicon Rubber and
forts. Donate your cell phones debossed with the words "Transverse
Myelitis" and www.myelitis.org.
GoodSearch It is estimated that approximately
130 million cell phones are retired
They are available in two sizes:

every year in the United States. Due

The Transverse Myelitis Association is
to their small size many of these Adult Size: 7 7/8" by 1/2" by 1/16"
participating in GoodSearch, a new
phones are thrown in the trash and thickness
Internet search engine that donates half
ultimately pose threats to the envi-
of the advertising revenue it earns to
ronment and public health. You can Youth Size: 7 by 1/2" by 1/16" thick-
charity. Each time you use Good-
donate your cell phones to help raise ness
Search and designate the TMA as your
funds for The Transverse Myelitis
charity of choice, GoodSearch will
Association! Each band comes in a clear plastic
donate a portion of the advertising
bag. The adult size band bags contain
revenue earned from the search to the
Participation in this program requires an informational insert with the fol-
Transverse Myelitis Association.
very little time or effort. All you lowing:
have to do is gather up your used and
It’s easy to use. Just go to the Good-
working cell phones. Please ask Transverse Myelitis is a rare neuro-
Search homepage:
your friends and family to give you logical disorder that is part of a spec-
www.goodsearch.com and type
their cell phones, as well. They will trum of neuroimmunologic diseases of
‘myelitis’ into the “Who do you Good-
likely be glad to get rid of them. Be the central nervous system. Other dis-
Search for?” box, and click verify. Af-
sure that you delete all of your per- orders in this spectrum include, Acute
ter the first time, each time you return
sonal information from the cell Disseminated Encephalomyelitis
to the home page, The Transverse
phone memory before you send (ADEM), Optic Neuritis, and Neuro-
Myelitis Association will appear as
them. myelitis Optica (Devic's disease) and
your designated charity. There is even
Multiple Sclerosis. Log onto
a button you can click to see the num-
Go to http://cellphones.myelitis.org www.myelitis.org for more informa-
ber of searches and the amount raised.
tion.
The instructions for donating the
Add GoodSearch to your bookmarks
phones is provided on the link from The price for a wrist band is $3 plus
or make it your homepage to make it
our web site. Simply find your cell shipping.
easier to use. Also, spread the word to
phone in the list of phones that are
your family and friends to help gener-
accepted, submit your personal infor- To calculate the shipping costs please
ate more contributions. GoodSearch
mation and you will be sent a box use the following chart:
estimates each search will raise $0.01
with a prepaid return label. The box
for your designated charity. 100 sup-
will be sent with instructions about
The Transverse Myelitis Association Page 101
Quantity - Add for Shipping to USA shipping supplies and fees are pre- A high school student in Pennsylvania
1 to 5 - $1.00 paid by the recycling company so made this a personal project for his
6 to 10 - $1.50 there is no cost to you or the TMA. school. He gathered information and
11 to 25 - $5.00 made a presentation to the school
26 to 50 - $10.00 All you have to do is visit our web- board and now the district is collecting
site (www.myelitis.org) and click the their empties and sending them in on
To determine the total cost of your link to “recycling inkjets.” Follow our behalf. He has since graduated
order, multiple the number of wrist the on-screen instructions to register and his younger brother has taken
bands times $3 and add the appropriate and order your supplies. It’s that charge of the program. He made a
shipping cost. simple! Your pre-paid shipping sup- video to promote the inkjet program
plies will arrive in a couple weeks, that appears on our web site!
For orders of more than 50 wrist bands and when they do, be sure to hand
or for orders outside of the USA, them out to friends and family to use Several people have taken collection
please send an email to: when they come across an empty boxes to their work place. Generally,
[email protected] or phone cartridge. If you don’t have a com- people are very supportive of the recy-
(937)453-9832; we will provide you puter or printer, you probably know cling effort and are excited to partici-
with the shipping cost. If you order someone who does. Order a roll of pate.
via an email message, please provide baggies and distribute them and en-
us with your full name and address and courage others to do the same. There This program has incredible potential.
the quantity you wish to purchase. is no cost to participate, order sup- Imagine if only 100 people participate
plies, or pay for shipping. Simply (2 per state in the US) and they each
Make a check or money order payable put your empty cartridge in the pre- sent in 3 inkjet empties per month.
to "The Transverse Myelitis Associa- paid package (instead of the trash That is a potential of $1,800 per
tion" and mail it to: can) and put it out with the regular month. Over a year’s time that
mail. The U.S. Postal Service will amounts to over $21,000! Now, imag-
The Transverse Myelitis Association take care of the rest. ine if 5 people per state participated, or
Paula Lazzeri, Treasurer even 10. It is easy to see that together
10105 167th PL NE Don’t hesitate to be creative! Here we can make a huge difference. If you
Redmond, WA 98052-3125 are a few examples of how some have any questions or would like to
people have gotten involved: learn more, contact Stephen Miller at
Please specify "for TMA wrist bands" (937)453-9832 or
in the memo portion of the check or A member in Ohio ordered a table [email protected].
money order. top baggie dispenser and printed sev-
eral of the TMA brochures available
To order using PayPal or by credit from our website. She made a small
card, please log on to the web page at: display in the waiting room of her
http://www.myelitis.org/ dentist’s office promoting awareness
wristbands.htm and support of the TMA. Another
Ohioan posted information around
The TMA Inkjet Recycling her small town, in the bank, the post
office, and local shops, resulting in
Project: An Easy Way to over 800 empty inkjet printer car-
Help tridges being sent it.

The Transverse Myelitis Association A family in New Jersey has been

has partnered with a recycling com- gathering empty toner cartridges and
pany to collect and recycle empty ink- inkjets from the local school district.
jet printer cartridges, and empty toner There are several buildings in the
cartridges from laser printers and copi- district and they all use printers and
ers. For every empty cartridge that is copiers. They collect the empties Reading for Rachel
sent, the TMA will receive $0.35 to every week or so from the schools
$3.00 per inkjet cartridge and $3.00 to and send them in. To date, they have
If you are a teacher, a student or a par-
$8.00 for every toner cartridge. All gathered and shipped over 1,000
ent of a student and would like to es-
empties!
Page 102 The Transverse Myelitis Association
tablish the Reading for Rachel Pro- eBay The TMA Newsletter and
gram in your school, everything you
will need to get the program started Journal Archives
Now you can sell an item on eBay
can be found on the Reading for Ra- and donate from 10% to 100% of the
chel web site: The TMA announced a new publica-
final sale price to help support the tion schedule and format for our news-
http://www.readingforrachel.org. TMA.
All funds received by The Transverse letters and journals. A newsletter will
Myelitis Association for the Reading be published each fall and spring, and
for Rachel Program are used exclu- Donations using Paypal a more extensive journal will be pub-
sively for research to better understand lished in January of each year. When
TM, to find treatments for the symp- International members, as well as people sign up for membership in the
toms of TM, and to ultimately find a those in the United States, can make TMA, they receive a packet of infor-
cure. If you are interested in starting donations to the TMA using PayPal. mation which contains the most re-
the Reading for Rachel program in You can donate online with PayPal cently published TMA Journal. The
your school, you can also contact using your checking account or newsletters are not included in the new
Cathy Dorocak, Rachel’s Mom and credit card. You can also use a credit membership packets.
International Chair of the Reading for card to donate through PayPal even if
Rachel Program: you are not a member. PayPal will We encourage people to read the pre-
[email protected]; show you the current exchange rate, viously published newsletters and
(440)572-5574. the equivalent amount in your pri- journals. They are an excellent source
mary currency (if not US Dollars) of information about the neuroimmu-
and handle the conversion for you. nologic disorders, both through articles
Online Shopping Please visit http://www.myelitis.org/ written by medical professionals and
donations.htm for more details. by people with these disorders and
There are numerous online shopping their family members, which describe
opportunities, as well as sales on eBay
which can be made through the fol- Donations by Check their personal experiences. Through
these publications, you can also learn
lowing link: http://www.myelitis.org/ about research and clinical trials, the
store.htm A percentage of the sales We always welcome and are grateful
for a donation to the TMA. You can TMA, awareness and fundraising ef-
are donated to the TMA. forts, and the support groups around
download a donation form to include
the country and around the world.
Café Press with your check from the link:
www.myelitis.org/donation-
form.htm Please make a check or All of the newsletters and journals are
You can purchase TMA logo items money order payable to The Trans- archived on our web site; you can find
through Café Press. verse Myelitis Association and mail them under the link ‘newsletters’ on
it to: the main page of our web site or you
can type www.myelitis.org/
iGive.com newsletters/index.html into your web
The Transverse Myelitis Association
Paula Lazzeri, Treasurer browser. You can view the newslet-
You can shop at more than 650 stores ters and journals as they were pub-
through iGive.com. You can find 10105 167th PL NE
Redmond, WA 98052-3125 lished by selecting the PDF files from
books, CDs, videos, software, office the column on the right, or you can
supplies, groceries, gifts, flowers, view them in html format from the
cookware, greeting cards and more at Thank you!
column on the left. The html files in-
the iGive Mall and from top merchants clude an index which makes it very
like Barnes & Noble, Drugstore.com, easy to find articles covering specific
Harry and David, Best Buy, Sharper subjects. Additionally, Jim has in-
Image and Dell. stalled a search engine for the entire
TMA web site, which allows searching
Amazon.com for specific subjects. Topics may be
searched in the newsletters and jour-
You can shop at Amazon.com for nals by using the search engine.
Books, Music, DVDs, Videos, Toys
and more.
The Transverse Myelitis Association Page 103
If you have difficulty in finding infor- Increased Postage Costs In addition to asking people to take
mation about any topic on our web personal responsibility for keeping
site, and the search engine does not The US Postal Service announced address, phone and email information
provide you with the results you were that postage rates will be going up updated and accurate, we are seeking
seeking, you should always feel free to this year. When reporting about help from our support groups in this
contact Jim for assistance. You can postage rates, the media focuses on important effort. We currently have a
send Jim a question or a request for the cost of mailing a letter that number of support groups who regu-
help at [email protected] weighs less than an ounce. Almost larly contact their membership in order
none of the TMA’s mailings involve to confirm the accuracy of their infor-
an envelope or package that weighs mation. For instance, the TM support
less than an ounce. Our mailing rates group in Germany and the UK TM
will increase a great deal more than Society regularly check their member-
the two cent increase you are hearing ship information. Please consider get-
We Don’t Want to Lose You about in the news. The rate increase ting involved in this important activ-
impacts every class of mail and it ity! If you have a flat rate long dis-
Please keep us informed of any also impacts all of the fees that are tance calling plan and internet access,
changes to your mailing address, your charged by the US Postal Service. you would be able to easily reach all
phone number and your email address. We pay an annual fee which allows of the members from your state or
You can send changes to me via email us to use the not-for-profit bulk mail- country to help verify their informa-
at [email protected]; you can send ing rate and that will also increase. tion. You would be helping the TMA
changes to me by mail, you can call Our international mailing rates will to save valuable resources, and you
me (614)766-1806; or you can fill out increase substantially. Postage is a would be offered the wonderful oppor-
a change of information form on the significant cost for the TMA, and tunity to make connections with the
web site: http://www.myelitis.org/ this increase will have a substantial very special people in our community.
memberform.htm – just click on the impact on the Association’s operat- We have a critical need for this work
box indicating that you are changing ing expenses. With this rate increase to be done in countries where we have
existing information. in mind, it becomes increasingly im- large numbers of members, but do not
portant for our members to maintain have a support group. If you live in
The Association does all of our mail- accurate information in our database. Brazil or India, please consider getting
ings using the postal service bulk, not- Please keep your information cur- involved in helping us with this impor-
for-profit rate within the United States rent. If you move, please provide us tant work.
and our territories and protectorates. with your new postal address. We
We save a considerable amount of appreciate your understanding and If you are a support group leader and
money by doing our mailings in this cooperation in this important matter. are involved in a mailing to your state
fashion. Unfortunately, when you or country members, please be sure to
let us know if you are made aware of
move and don’t provide us with the Help Wanted: Keeping Our any information changes. You can
change, our mail will not be forwarded
to you, after your grace period, and Membership Information send this information to Sandy Siegel
this class of mail is not returned to the Accurate at [email protected] or to: 1787
sender. The cost to the Association is Sutter Parkway, Powell, OH 43065-
substantial; the materials we are mail- 8806 USA.
By doing something as simple as
ing to a bad address just ferment on keeping your information accurate in
some post office floor. These are If you are interested in helping us,
our records, you are helping to save
wasted printing and postage costs. please get in touch with Sandy Siegel
the TMA money; funds that can be
Please keep your information current. or Stephen Miller at:
used for research or to support sym-
Your diligence is greatly appreciated. [email protected] or
posia or the TMA Kid’s Camp. The
(937) 453-9832. Even if you do not
TMA uses a bulk postage rate for our
have a support group in your state or
mailings which results in consider-
country, but would like to help us with
able cost savings. Unfortunately,
this work, please get in touch. We
with this method of mailing, we are
would be grateful for your assistance.
not notified when an envelope is not
delivered due to a bad address with-
out incurring additional costs.
Page 104 The Transverse Myelitis Association

Officers and Board of Directors of The Transverse Myelitis Association

Sanford J. Siegel Paula Lazzeri Jim Lubin

President Treasurer Information Technology
1787 Sutter Parkway 10105 167th Place NE Director
Powell OH 43065-8806 Redmond WA 98052 [email protected]
(614)766-1806 (425)883-7914
[email protected] [email protected] Honorary Board of Directors

Stephen J. Miller Deborah Capen Deanne Gilmur

Vice President Secretary Founder
1717 State Route 72 South PO Box 5277 3548 Tahoma Place W
Jamestown OH 45335 Hemet CA 92544 Tacoma WA 98466
(937)453-9832 (951)658-2689 (253)565-8156
[email protected] [email protected] [email protected]

www.myelitis.org
The Transverse Myelitis Association Powell Ohio
43065
Sanford J. Siegel
1787 Sutter Parkway
Powell, Ohio 43065-8806

Southwest Symposium on Neuroimmunologic

Disorders, April 26 -28, 2007, Albuquerque
Summer Camp for Kids with TM, ADEM,
NMO or ON and their Families: August 19 –
24, 2007, Victory Junction Gang Camp,
Greensboro, NC