Newsletter v7n2

Volume 7 Issue 2 Spring 2007
From the Editor this project. We recognize the many an email address. Please identify
Sandy Siegel challenges involved in accomplish- whether the doctor is a family/general
ing this task and we have accepted practice physician, an internal medi-
that it will take a long time to de- cine physician or a pediatrician. We
I have two important issues to address velop. We also recognize the critical are also asking you to provide us with
in this column. The first concerns a value of this endeavor and we are all of your contact information in con-
program focused on quality medical committed to doing the work re- nection with this reference in case we
care for people with the neuroimmu- quired, however long it takes. The need additional information from you
nologic disorders. The second issue results for all of you will be a net- about the basis of your recommenda-
concerns the ways we distribute infor- work of family practice physicians tion. In your referral, please include
mation to our members. Both issues and pediatricians who have access to how long you have been seeing this
will need your participation to suc- information about the neuroimmu- physician and please confirm with the
ceed! nologic disorders, information re- doctor’s office that this physician is
garding the treatment strategies for accepting new patients. If this project
The Transverse Myelitis Association is the symptoms of these disorders, and proves successful, we also hope to
developing a network of physicians in- experience with caring for people eventually extend it to include other
terested in caring for patients who with these disorders. It will often be specialists, such as neurologists, urolo-
have long-term symptom management the general practitioner that has gists, psychiatrists, etc. As many of
issues from TM, NMO, ADEM and openings available on short notice, you already know, some specialists are
ON. I presented my vision for this when it may take weeks to get in more knowledgeable than others when
network of physicians in my column in with the specialist. This is by no it comes to these rare neuroimmu-
the TMA Journal Volume I. We are means an attempt to phase out the nologic disorders.
initiating this project by establishing a specialists, but to give you more
network of family practice or general guidance as far as the resources that The symptoms from TM, NMO,
practice physicians and pediatricians. are available for your medical care. ADEM and ON are complex and diffi-
Your general practitioner should cult to manage. Some people have re-
We have formed a team to manage this know you better than any of your markable recoveries from their im-
important project. Dr. Angela Middle- physicians, because their training re- mune attacks. Unfortunately, even for
ton is a family practice physician in quires them to look at the whole pic- those who have good recoveries, there
Virginia who also has transverse mye- ture. are often symptoms from myelin and
litis. Dr. Benjamin Greenberg is the neuronal damage in the spinal cord
Co-Director of the Johns Hopkins TM We need your help! If you are cur- that will go on for the long term.
Center and serves on the TMA Medi- rently seeing a family physician or Symptoms such as nerve pain, pares-
cal Advisory Board. Dr. Greenberg pediatrician who is providing you thesias, spasticity, depression, and fa-
and the other physicians associated with excellent medical care, includ- tigue typically involve focused atten-
with the Johns Hopkins TM Center ing the treatment of your or your tion from a physician. Multiple treat-
have a strong and long-term commit- child’s symptoms from TM, NMO, ment strategies are frequently required
ment to providing education to physi- ADEM or ON, we need for you to before the most effective therapies or
cians about the acute and long-term send us their names and contact in- combinations of therapies are found.
treatment of the neuroimmunologic formation. This information can be There are no silver bullets and there is
disorders. This education component submitted on a form that has been set most definitely not a one-size fits all
will be a critical element of the physi- up by Jim on our web site: http:// approach for treating these symptoms.
cian network. I will also serve on this www.myelitis.org/pnr/ or you can
team. send me the information via an email Because the symptoms of these disor-
or by letter. Please provide the phy- ders are so difficult, finding effective
Angie, Ben and I recently had a meet- sician’s complete name, mailing ad- treatments and going through the proc-
ing exclusively devoted to our work on dress, phone number, and if possible, ess of finding quality medical care, in
Page 2 The Transverse Myelitis Association
general, can become a very frustrating vice very significantly increased their well over 700 members. In addition to
and demoralizing process for many rates. The postal service created a taking on the work of printing and
people. I am not overstating the mag- premium rate for all mail that has to mailing these publications, our UK
nitude of the problem. I have very be manually sorted; those pieces that support group also raises their own
first-hand evidence regarding this is- are too large or too thick to be sorted funds to cover these costs. We owe
sue, because when many of you be- through their machines. Unfortu- Geoff Treglown, Lew Gray, Sally Ro-
come significantly frustrated with this nately, almost everything we mail is dohan and the UK support group a tre-
process, you often call me or send me too large and too thick to be auto- mendous debt of gratitude for their
an email message seeking help. mated mail. willingness to take on this important
work and we urge our members in the
Not every medical or health issue you The new postal rates will signifi- UK and Europe to contribute gener-
experience will derive from the myelin cantly increase our costs for mailings ously to support these efforts.
and neuronal damage that occurred in in the United States. New TMA
your spinal cord. It is important to be members receive a packet of infor- Errol White and the Australia support
working with a physician who can de- mation that used to cost us $2.07 in group also do the printing and mail-
termine which of your issues are neu- postage. The new postage cost for ings for our members in Australia and
rological and which issues could be as- this packet is $2.47. We are going to New Zealand. Jenny Moss and Mart
sociated with a different diagnosis, experience similar increases in the Uys and our support group from South
e.g., having bladder dysfunction from mailings of the TMA journals and Africa have recently taken on the re-
TM doesn’t make you immune from membership directories. sponsibility for these mailings to our
having your prostate grow to the size members in South Africa. By their
of a grapefruit. While the mailings in the United taking on this critical work, they have
States will be more costly, we be- made it possible for our members in
The goal of our physician network lieve we can absorb these additional these countries to receive all of the in-
project is to help people find the high- costs and not reduce either the fre- formation mailed by the TMA.
est quality medical care. If you are quency or the size of our mailings for
currently receiving medical care from our national members. Unfortu- The increase in postage costs is going
a physician who you would recom- nately, this is not going to be possi- to significantly change how we distrib-
mend to others in the TMA commu- ble for our mailings to international ute information to our international
nity, please take the time to get me this members. The cost of mailing the members who do not live in a region
information. We are an international new member packets and journal to of the world covered by the three sup-
organization and we are very inter- the majority of our international port groups doing these mailings. The
ested in serving our international members was $6 for a single enve- regions that will be impacted by these
membership. Please send us the lope; and this was for a letter post changes include South and Central
names of your physicians who you economy rate, the lowest-cost inter- America, all of Asia, the Middle East,
would recommend from around the national option. The US postal ser- India, Pakistan and the Pacific.
world. If you are a physician and vice has terminated this class of mail
would be interested in serving on the with the changes imposed in May. The TMA will continue to do biennial
physician network team, we would ap- The new rate for the lowest class of mailings of the membership directo-
preciate your participation. international mail is over $10 for a ries. For our international members,
single envelope. It is just not possi- these will become regional directories
The TMA considers patient, caregiver ble for the TMA to manage those in- which list members only from your re-
and medical professional education creased postage costs. gion of the world. To honor the pri-
among the most important services we vacy of our members, we will not post
provide to our membership. We know We are very fortunate and so grateful any of these directories on our web
that the better informed you are, the to a number of our international sup- site. Consequently, there is no other
more effective you will be in advocat- port groups who have taken on the way for us to get this critical support
ing for your medical care. The costs responsibility for printing the TMA information to our members. The new
of providing you with this critical ser- publications and mailing this infor- member packets will provide detailed
vice have recently increased in a very mation to TMA members. Our sup- guidance regarding the information
substantial way. Postage costs have port group in the UK does all of the that is posted on our web site, and the
the single largest impact on our ability printing and mailings for members in many ways to learn about the neuroim-
to provide you with information. This the UK and to our membership munologic disorders and to find sup-
past May the United States Postal Ser- across Europe. These mailings go to port. We will continue to mail the
The Transverse Myelitis Association Page 3
newsletters to international members The TMA is an international organi- Medical Approach to the
twice a year, and we will mail the re- zation. We are as concerned about Management of Neuropathic Pain
gional directories biennially. The our members in Pakistan as we are D. Joanne Lynn MD
TMA journals will need to be read for our members in Ohio. If you live The Ohio State University MS Center
from our web site. Thus, it is very im- in a region of the world where we
portant that you check our web site of- need your help, please consider pro-
ten for new postings and information. viding our members in your country Adapted from a presentation at the
The entire archives of our newsletters with this important service. Get into 2006 Rare Neuroimmunologic Disor-
and journals can be found under the your membership directory and see if ders Symposium
link newsletters. you can’t find a group of people who
will be willing to take on this effort This article focuses on the medical
The TMA has large numbers of mem- together. I am not asking you to do treatments for neuropathic pain. I am
bers in Canada, Brazil and India. We something that you are unable to do. not a pain specialist or an anesthesi-
need people to volunteer to do the If I figured out how to do all of this ologist. I am a neurologist in an MS
printing and mailings to people in your stuff, so can you. clinic; my experience derives from
country and region of the world so that treating people with neuropathic pain
all of our international members have Please take good care of yourselves who come to our clinic. I am going to
the same access to this critical infor- and each other. describe the types of pain and clinical
mation. The amount of work involved manifestations of neuropathic pain, the
in each mailing is very small. Also, various ways that pain neurons re-
we are not asking you to bear the costs spond to injury and how different
of these mailings; the TMA will pay medications may modulate the pain
for the printing and postage costs. If pathways. Finally, I will describe the
first and second line medications that
you can help us with this important Douglas A. Kerr, M.D., we use for the management of neuro-
work, please get in touch with me.
Ph.D. will be speaking pathic pain.
To change our publication and mailing at the first UK TM We have more information about neu-
practices was an extremely difficult
decision for us. Pauline and I gauge Conference on Saturday ropathic pain in MS patients than we
do from any of the other neuroimmu-
the value of these mailings by thinking
about what it would have meant for us
13th October 2007 nologic diseases. From various sur-
to receive this new member packet in in London. veys of large MS clinic populations,
the mail when she was first diagnosed. 45% to 55% of patients report that
We were totally on our own and we they have some sort of pain syndrome.
had absolutely no information. The in- In the past, it was believed that pain
formation is critical; so is the envelope was not a symptom of MS. This is ob-
showing up in the mailbox, or what- viously not the case. A large survey
ever the receptacle for collecting mail with 1672 respondents was adminis-
looks like in Bangladesh. When peo- © The Transverse Myelitis Associa- tered to determine the pain syndromes
ple are given the diagnosis of a disor- tion Journal and Newsletter are pub- that were found with MS (Archibald,
der that they’ve never heard anything lished by The Transverse Myelitis et al. 1994). Trigeminal neuralgia was
about and wouldn’t have the slightest Association, Seattle, Washington and reported by 2% of the patients. This is
idea where to find another person who Powell, Ohio. Copyright 2007 by one of the most difficult pains; a stab-
has it, having something tangible rep- The Transverse Myelitis Association. bing, lancinating pain in the face,
resenting a network of people who All rights reserved. No part of this which may be triggered by speaking or
care about what is happening to them, publication may be reproduced in chewing. We sometimes have to ad-
offering information to help them any form or by any electronic or me- mit people to the hospital who have
manage their medical care and offering chanical means without permission flares of trigeminal neuralgia, because
guidance and support through this dif- in writing from the publisher. We they cannot eat or stay hydrated.
ficult journey is just an invaluable gift. ask that other publications contact us Lhermitte’s sign was reported by 9%
We know and understand; and that is for permission to reprint any article of the MS patients in this survey. This
why we will continue to mail informa- from The Transverse Myelitis Asso- is an electric feeling that spreads down
tion to everyone; it just can’t be the ciation Journal and Newsletter. the body when you bend your head
big $10 envelope. forward. Dysesthetic pain was re-
ported by 18.1%. Back pain was iden- other lightly painful stimulus. For occur acutely with the shingles out-
tified by 16.4%. Back pain may or instance, when I am doing a neuro- break or may follow the recovery.
may not be directly related to the MS. logical exam and touch the skin with Both diabetic neuropathy and post-
Painful tonic spasms were reported by a pin that might evoke a sensation herpetic neuralgia are so common and
11% of the patients. Sometimes peo- that is briefly, transiently uncomfort- so standard that they are most often
ple with spinal cord disorders experi- able, for someone with this type of used as neuropathic pain syndrome
ence spasms of the hand or leg which pain, it might cause a spreading or models to study drug treatments.
occur as constant or intermittent con- prolonged painful feeling. Many of the drugs that I present in this
tractions and can be very painful. article were studied in the context of
When we are treating someone with these diseases. These drugs are not
Dr. Douglas Kerr has reported from pain, it is important for us to try to studied in disorders that are rare, such
his experience at the Johns Hopkins determine the cause. It is helpful as in TM or in MS. Pain is common in
Transverse Myelitis Center that during when patients give these issues some TM and MS, but it is difficult to study,
the acute phase, 80-94% of patients thought so that they come to their ap- because people have such a wide vari-
have numbness, paresthesias or band- pointments being able to describe ety of characteristics associated with
like dysesthesias (Krishnan, et al. their pain. During our assessment, their pain. Spinal cord injury pain
2004). Kerr also indicates that pain or we want to know the location of could include TM. People with
dysesthesias are the most debilitating pain. We want to identify the char- strokes can have pain from injuries to
long-term symptom in approximately acter of the pain; is it stabbing, burn- the spinal cord or higher pain path-
40% of TM patients (Kerr 2001, in ing, hot, cold, ripping, squeezing? ways or centers.
Griffin and McArthur, Current Ther- We are seeking some descriptive
apy in Neurologic Disease). words for the pain. If a person says We often talk about different kinds of
that it is “bad” pain or that it is neuropathic pain qualities in describ-
There are different types of pain. No- “painful all over;” that information is ing the sensations. The pain can be
cioceptive pain is caused by activation less helpful for us in determining the steady; often described as burning, hot
of pain receptors from injuring tissue. cause of the pain. We are interested or sometimes cold. It may be paroxys-
The causes can be somatic, such as in the pain’s intensity and the tempo- mal shock-like or stabbing. It may be
from a skin burn, muscle tear or pulled ral pattern; is it acute or chronic. We pain to touch (allodynia). It can be
ligament or from visceral structures, also want to know if there are exac- deep, aching pain. Often the pain is
such as infection of the gall bladder, erbating or ameliorating factors; the most difficult at night.
bowel obstruction and distention. what kinds of things make it better or
Neuropathic pain is different from no- worse. There are non-pharmacologic treat-
cioceptive pain. Neuropathic pain is ments of pain. We rely on physical
from injury or dysfunction in the nerv- This is a list of common neuropathic therapists to help with modalities, such
ous system and can occur in the pe- pain syndromes or causes: as application of heat and cold and
ripheral or the central nervous system. Painful diabetic neuropathy gradual, graded therapeutic exercise.
Within the nervous system, the injury Post-herpetic neuralgia We may use acupuncture and transcu-
starts sending off abnormal signals in- Cancer-associated taneous nerve stimulation. If pain is
terpreted as “I’m experiencing pain” Spinal cord injury difficult to manage, we may need to
even though there is no discernable ac- Complex regional pain syndrome look into sleep quality and manage-
tive tissue damage. Multiple Sclerosis ment of depression. Every pain syn-
Trigeminal Neuralgia drome is made worse by depression.
There are a number of different neuro- Post-stroke pain We need to treat the associated depres-
pathic pain sensations or experiences. HIV-related pain sion which is found in high percent-
Dysesthesias are spontaneous unpleas- ages of people with chronic pain. Psy-
ant sensations which occur without a People with diabetes get peripheral chological approaches are important
clear cause. For instance, it might feel nerve disease. They can experience non-pharmacologic treatments of pain.
as though you are being stabbed by a burning and pain that can be so diffi- These may include cognitive therapies,
knife, but you are not. Allodynia re- cult that they do not even want the such as relaxation and imagery hypno-
fers to pain perception produced by a sheets to touch their feet. This type sis, biofeedback, behavioral therapy
normally non-noxious stimuli, such as of pain is very common, because dia- and music and art therapy.
lightly brushing the skin. Hyperpathia betes is so common. People that
or hyperalgesia refers to prolonged or have herpes zoster or shingles may I am going to provide an overview of
exaggerated pain from a pinprick or also develop the pain syndromes that the pharmacologic treatments for neu-
ropathic pain. To many patients, the can cause an increase in the numbers control pathways that inhibit pain
long list of medications is baffling and of sodium channels. That increase (inhibitory neurons that use neuro-
frustrating. Some people just do not in sodium channel density impacts transmitters, such as norepinephrine -
want to try any more drugs. It is im- the function of the nerve with resul- NE, dopamine - DA, serotonin – 5-HT
portant to understand the different tant hyper-excitability and spontane- and endogenous opioids). If the sys-
types of medications and why we are ous or recurrent nerve discharge or tems that control our pain appreciation
trying these as treatments for neuro- sensitization. The nerve can start to pathways are damaged, then there will
pathic pain. fire on its own, without a stimulus be increased problems with pain.
and it can feel like stabbing or a There are medications that can in-
Optimally, management of neuro- shock. You might also get recurrent crease the activity of the inhibitory
pathic pain would be guided by knowl- nerve discharges. For example, it neurotransmitters to help decrease pain
edge of the underlying problem and its might be set off once by being perception.
resultant mechanisms of pain produc- bumped and then it keeps going off.
tion. For instance, if you had stabbing The whole system becomes sensi- There are three main classes of drugs
pain, it would be great if we knew ex- tized to the point where it will fire that we use to treat neuropathic pain:
actly where in the nervous system the off more easily; there is a lower antidepressants, anticonvulsants or
malfunctioning circuit was located, threshold to fire caused by this kind anti-seizure drugs, and analgesics,
what specific neurotransmitter system of injury. which include opioids. Antidepres-
was dysfunctional and what drug sants are a well-established older ther-
would fix the problem. That is just not We have some drugs that modulate apy; we have used them for decades.
the way it is for almost all of the pain this sodium channel activity and help These are the antidepressants that were
syndromes. The pain results from neuropathic pain. Some of these are around before fluoxetine (Prozac®).
multiple processes and we have not anti-seizure medicines, such as car- They were not optimal for the treat-
been able to define them with a suffi- bamazepine (Tegretol®), oxcar- ment of depression, because of their
cient degree of detail or specificity. bazepine, and Lidocaine. Some are high side-effect profile. They are good
We have very little information about tricyclic antidepressants, such as for treating pain, however, because we
the specific sites or mechanisms of phenytoin (Dilantin®), topiramate can use lower doses that are associated
dysfunction for various pain syn- (Topamax®), and lamotrigine with fewer side effects. There are nu-
dromes. (Lamictal®). merous studies which have demon-
strated pain relief without an antide-
Wherever nerves are injured or in the There are two subunits of voltage pressant effect in many types of neuro-
normal appreciation of pain, pain re- gated calcium ion (Ca++) channels pathic pain, including diabetic neu-
ceptors trigger electrical impulses of that are upregulated on the dorsal ropathy, post-herpetic neuropathy,
nerve fibers. That information then root ganglion (on the nerve fibers) headache, facial pain and low back
enters the spinal cord and the neuron and spinal cord dorsal horn neurons pain.
releases a chemical neurotransmitter - (spinal cord neurons) after injury. If
often glutamate. Glutamate activates the function or number of these chan- The neurotransmitters that are affected
second order neurons that carry pain nels is abnormal, it can be associated by the antidepressants are norepineph-
signals to the thalamus and other areas with allodynia; a stimulus that would rine, dopamine, and serotonin. The tri-
in the brain and brainstem where pain not normally be painful becomes cyclic antidepressants are older medi-
appreciation is modulated and con- painful. Both gabapentin cations, such as amitriptyline
trolled. (Neurontin®) and pregabalin (Elavil®) and nortriptyline
(Lyrica®) bind to these subunits and (Pamelor®). These are primarily a
What do we know about the mecha- inhibit the high voltage Ca++ chan- combination of serotonin and
nisms of neuropathic pain? Nerve fi- nels. There are other medications noradrenaline reuptake blockade.
bers bring pain information, for in- that also bind to Ca++ channels. They have some other effects, includ-
stance, from limbs or from skin and ing peripheral sodium channel block-
there are several different kinds of so- Nerve damage can produce excita- ade and weak NMDA antagonism.
dium channels that are needed for fir- tory neurotransmitters and chemicals
ing of these nerve fibers. One type of (peptides) which may cause central These medications work to inhibit neu-
Na+ channel is found only on nocio- sensitization in the spinal cord and ropathic pain by blocking the reuptake
ceptive (carrying information about brain pathways for pain. These of one or more of these neurotransmit-
pain) sensory neuron fibers. If you nerve injuries may also cause dam- ters. A nerve sends information via a
have damage to that type of nerve, it age (toxicity) to descending pain chemical mechanism out to the next
adjacent nerve. The information is a fect both serotonin and norepineph- The next class of medications for neu-
pain signal that is interpreted by the rine. These drugs are great for the ropathic pain are the antiepileptic
brain as, “You are having pain.” The treatment of depression, but are not drugs. Gabapentin (Neurontin®) is
transmission of pain information from very effective for neuropathic pain. FDA approved for post-herpetic neu-
one nerve to another can be decreased ralgia or zoster (for patients in the
by slowing reuptake of these neuro- Another group of newer antidepres- United States) and for neuropathic
transmitters back into the releasing sants are serotonin-norepinephrine pain in general in the United Kingdom.
nerve after each nerve firing. This is reuptake inhibitors. Venlafaxine It blocks the sodium channels (Ca++)
one mechanism that can inhibit the (Effexor®) inhibits both norepineph- and inhibits excitatory neurotransmit-
transmission and perception of pain. rine and serotonin at 150 mg/d but ter release. It may decrease the proc-
not 75 mg/d. It has been effective in ess of central sensitization resulting in
When we treat neuropathic pain with pain treatment, but it is not being lower thresholds for pain. It has a
nortriptyline (Pamelor®) and amitrip- used as a first line medication. Du- good side effect profile for most peo-
tyline (Elavil®) the guidelines are to loxetine (Cymbalta®) is FDA- ple. There is great variation in how
start low and increase slowly. There approved for the treatment of painful much gabapentin a person can handle;
also have to be accommodations for diabetic neuropathy. It has relatively some people cannot handle 900 mg/
age. If the person is younger than 65, few side-effects, and is also used to day, while others are able to tolerate
then perhaps start with 25 mg qhs; if treat depression, so it has the benefit above 3600 mg/day.
older than 65, then start with 10 mg of being a two-for-one drug.
qhs. The dose is also dependent on the Pregabalin (Lyrica®) is a newer drug
person’s weight. If we need to in- There is a group of antidepressants that is a presynaptic calcium (Ca++)
crease the dose, we increase gradually; that are norepinephrine-dopamine re- channel blocker that reduces excitatory
10 – 25 mg q 1-2 weeks. We also uptake inhibitors; two neurotransmit- neurotransmitter release. It is FDA ap-
have to look for various side effects, ter systems. Bupropion proved for painful diabetic neuropathy
including glaucoma, urinary obstruc- (Wellbutrin®) inhibits both norepi- and post-herpetic neuralgia. It comes
tion, and asthma. The traditional tried nephrine and dopamine reuptake. It in 50 and 75 mg tablets and we can
and true method was to keep increas- has been reported to be effective in give up to 600 mg/day. It can cause
ing the drug until pain relief was the treatment of both peripheral and sedation and ataxia as you push up. It
achieved or the person experienced a central pain syndrome. There are a will be interesting to see how this
significant side-effect. We exercise number of medications in this group medication works for some of the pain
more care today in watching for the so there are options. There is a low syndromes that we see in transverse
side effects of these medications. The side-effect frequency, but bupropion myelitis.
side-effects from tricyclic antidepres- can cause weight loss, occasional
sants include: dry mouth, constipation, agitation or insomnia. We make de- Carbamazepine (Tegretol®) is an older
weight gain, urinary retention, tachy- cisions about medications on an indi- drug that is FDA approved and has
cardia, and drowsiness. Dry mouth vidual basis and attempt to match been especially effective for the treat-
can be helped with sugar free lozenges medications with a particular set of ment of trigeminal neuralgia, the facial
or artificial saliva. We will discon- issues. For instance, a person might pain seen in MS, and also shock-like
tinue these medications, if there is uri- have a problem with sleepiness or in- pains. Carbamazepine can cause seda-
nary retention or tachycardia. For somnia, and we would select the ap- tion and balance problems. There are
drowsiness, we will decrease the dose. propriate medication accordingly. other anti-seizure medicines that are
not first line drugs; they may not be as
Some of the newer antidepressants For all antidepressants we should good and they are not as well studied.
have been evaluated as treatments for consider the FDA black box warn- Oxcarbazepine (Trileptal®) is related
pain. These are the selective serotonin ings for increased risk of suicidality to carbamazepine and there has been
reuptake inhibitor (SSRI) agents in depressed patients treated with an- one positive study in painful diabetic
(agents that selectively affect neuron tidepressants. Special attention and neuropathy. Other antiepileptic drugs
systems with serotonin receptors), in- consideration in this regard needs to include Lamotrigine (Lamictal®), a
cluding fluoxetine (Prozac®), paroxet- be focused on adolescent and pediat- second line drug that has been shown
ine (Paxil®) and sertraline (Zoloft®). ric patients. This really means that to be effective against neuropathic
The results from studies of the SSRIs we should continue to do what we pain of several different etiologies, in-
in the treatment of painful diabetic have always done; when using these cluding spinal cord injury. Valproate
neuropathy suggest that these agents drugs for pain, we assess for comor- (Depakote®) is useful for migraine
are less effective than agents that af- bid depression and suicidality. prophylaxis and one study has shown a
benefit for painful diabetic neuropathy. Opioids may be associated with tol- to obtain effective treatment for their
Multiple toxicities and drug-drug in- erance; there may be a need to in- neuropathic pain. Fortunately, there
teractions make it a second line drug crease the dose over time to maintain are a large number of drugs that are ef-
(Kochar, et al. 2004). There have been effectiveness. It may also be associ- fective for treating neuropathic pain.
no randomized controlled trials for the ated with physical dependence and Finding the appropriate treatments is a
use of the selective GABA reuptake with unpleasant withdrawal symp- great challenge and it is important to
inhibitor Tiagabine (Gabitril®) for the toms when stopping the drug. Less have a good partnership with your
treatment of neuropathic pain condi- often, there may be addiction; drug physician in working through the treat-
tions. seeking behavior to satisfy drug ments. It is a trial and error process to
craving despite harm. For most peo- find the most useful drug or combina-
There are various topical agents that ple with a pain syndrome, they do tion of drugs at the right doses with the
we use for neuropathic pain. There is not develop addiction or drug seek- least side effects to treat neuropathic
the lidocaine patch 5% (Lidoderm®) ing behavior when using opioids as a pain.
and Capsaicin, a cream made from the legitimate treatment.
chili pepper. Capsaicin affects pain fi-
bers. It burns when it is initially ap- Setting up an opioid prescription pro-
plied. It may then cause some degen- gram helps to reduce the risk of ad-
eration of neurofibers, and that may diction. Having scheduled appoint-
create benefit in the long run. There ments on a regular basis reduces risk
are also some topical NSAIDs and for abuse. There can be an agree-
topical antidepressants that are avail- ment with the patient that they obtain
able. all of the analgesics or opioids
through one doctor and one phar-
There are also some miscellaneous macy. There can be a written con-
agents that have been used for neuro- tract that sets limits and may agree to
pathic pain. Baclofen (Lioresal®) is a urine testing. Some of the opioids
GABA-A receptor agonist that is are tramadol (Ultram®), morphine or
mainly used for the treatment of spas- extended release morphine, oxy-
ticity. It has also been reported to be codone, fentanyl patch and vicodin
effective in treating trigeminal neural- or percocet for breakthrough pain. The Transverse Myelitis Association is
gia. Clonidine has been effective in proud to be a source of information
the treatment of cancer-associated neu- Finally, I want to discuss combina- about Transverse Myelitis and the
ropathic pain, but requires study in tion therapy for the treatment of neu- other neuroimmunologic disorders.
non-cancer neuropathic pain. ropathic pain. Patients consider a Our comments are based on profes-
30% improvement in pain to be sig- sional advice, published experience
Opioids have generally been underuti- nificant. In many treatment trials and expert opinion, but do not repre-
lized for the treatment of neuropathic only 1 out of 3 to 4 patients treated sent therapeutic recommendations or
pain. In addition to working on opioid will experience moderate improve- prescriptions. For specific information
receptors, opioids also decrease gluta- ment. It is difficult to identify the and advice, consult a qualified physi-
mate receptor activity. Physicians underlying pain mechanisms in a pa- cian. The Transverse Myelitis Asso-
who are not anesthesiologists or pain tient. Due to these uncertainties, it is ciation does not endorse products, ser-
doctors are typically reticent to use sometimes important to try multiple vices or manufacturers. Such names
opioids and neurologists tend to be agents. A common approach used in appear in this publication solely be-
conservative. There have been some combination therapy is to start with cause they are considered valuable in-
studies in the past that have reported one drug and titrate up until maxi- formation. The Transverse Myelitis
that opioids are less effective for neu- mum benefit or intolerable side ef- Association assumes no liability what-
ropathic pain compared to tissue injury fects result. In one study (Gilron, soever for the contents or use of any
(somatic) pain. It is certainly appro- 2005), a combination of gabapentin product or service mentioned.
priate for a patient with moderate to and morphine was found to be more
severe pain who has not responded to effective than each drug used sepa-
other types of treatment and who is rately.
willing to accept the discipline of a
structured opioid prescription program It is important for patients to remain
to use these medications. hopeful and persistent in their efforts
Reprinted with permission from the publisher: Lippincott Williams & Wilkins
Reprinted with permission from the publisher: Lippincott Williams & Wilkins
Myelitis and Rheumatological disease. I have completed full Resi- II. The diagnosis of rheumatic dis-
Syndromes: Diagnostic Challenges dency training in Neurology, and am ease -- the premium of a patient-
and the Need for Research currently completing a Rheumatol- physician dialogue
Julius Birnbaum, MD ogy Fellowship. Below, I discuss
Johns Hopkins Clinic for why my dual training in Neurology As indicated above, most neurologists
Neurological Rheumatic Disease and Rheumatology has afforded me a are familiar with the diagnostic criteria
unique diagnostic and prognostic of multiple sclerosis (MS) and Devic’s
I. Introduction perch to optimize care of patients syndrome. These criteria emphasize
with neurologic rheumatic disease. that myelitis or other neurological syn-
Although myelitis can occur in the dromes are consistent with MS only if
context of isolated neurologic syn- For purposes of this article, myelitis there is no better diagnostic expla-
dromes (i.e., multiple sclerosis, De- refers to an inflammatory syndrome nation. One of the ironies and weak-
vic’s syndrome), it is less appreciated affecting the spinal cord, causing nesses of updated diagnostic criteria of
that myelitis can emerge in the context weakness, pain, and/or bowel or MS is that it does not elaborate on the
of rheumatologic diseases. Systemic bladder difficulties. Within the past specific steps needed for the evalua-
rheumatic syndromes - lupus, years, the term “myelitis” has been tion of alternative diagnostic explana-
Sjogren’s syndrome, scleroderma - are further subcategorized by the longi- tions. In the context of this diagnostic
diseases characterized by deleterious tudinal extent of spinal cord inflam- vacuum, neurologists who are not
inflammation directed against any or- mation. Specifically, “transverse” trained in the evaluation of rheumatic
gan. Therefore, a crucial diagnostic myelitis refers to inflammation lim- disease can improperly screen patients
challenge in the evaluation of myelitis ited to less than 3 vertebral segments for rheumatic disease. For example,
is the elucidation of symptoms sugges- on MRI (the vertebral segments are neurologists may perform blood tests
tive of systemic rheumatic syndromes. bones encasing the spinal cord); in checking for ANA antibodies, which
When rheumatic disease goes unde- contrast, “longitudinal” myelitis (or are antibodies which can be seen in lu-
tected, flares or progression of myelitis “longitudinal extensive myelitis”) re- pus disease. However, these antibod-
can worsen, and ongoing inflammation fers to inflammation spanning 3 or ies can also be seen in the general, un-
can damage other organs. A central more vertebral segments. The term affected population. Therefore, there
theme of this article is that myelitis pa- “mylelitis” will be used to encom- is no specific blood test which can ir-
tients who are not adequately and pass both diagnostic entities of reducibly establish a diagnosis of rheu-
comprehensively screened for rheuma- “transverse,” as well as matic disease. Ultimately, the diagno-
tological syndromes are being incom- “longitudinal” myelitis. Both sis of any rheumatic syndrome tilts on
pletely evaluated, especially as rheu- “transverse” and “longitudinal” mye- the interpretation of blood tests in the
matic disease is a risk factor for new litis can occur in the context of rheu- context of a careful history and physi-
flares of myelitis. matic disease. An ongoing research cal examination. This premium on pa-
interest is whether for patients with tient-physician dialogue is one of the
Unfortunately, neurologists lack the rheumatic disease, the pattern of pleasures of Rheumatology. However,
specialized training to detect subtler “longitudinal” versus “transverse” when blood tests are divorced from
manifestations of rheumatic disease. myelitis has important mechanistic or such a dialogue, then potential treat-
In July, 2007, under the aegis of the prognostic differences. A paradig- ment or diagnostic workup can be mis-
Johns Hopkins Transverse Myelitis matic approach to both types of mye- appropriated.
Center, I will be starting a unique litis occurring in the context of rheu-
Clinic wholly dedicated to evaluating matic disease is discussed below. At this unique Clinic, my training in
myelitis or other neurological syn- Rheumatology will enable me to elicit
dromes in the context of rheumatic timely and crucial symptoms which
might point towards a systemic auto-
immune disease. seemingly arbitrary and undiscrimi- tal signs that can signify scarring.
nating as the breadth of the rheuma-
III. Example of a “rheumatological tologist’s review of systems. Be- V. Formulation of the diagnostic im-
review-of-symptoms” cause any organ can be attacked in pression
rheumatic disease, questions need to
In medical parlance, a “review-of- comprehensively delve into the most Recently, I encountered a patient with
symptoms” refers to an exhaustive list subtle symptoms suggestive of sys- myelitis, who for years had been com-
of diagnostic questions poised to de- temic inflammation. Without such plaining of being thirsty. Her neurolo-
tect and weave seemingly discrepant information, any “screening” tests gists, aware that the impaired salivary
symptoms into a diagnostic story. A which are commonly performed by production in Sjogren’s syndrome can
neurologist’s review of symptoms will neurologists are incomplete. In a produce symptoms of thirst, had con-
include questions relating to decreased sense, this is the redemptive aspect sidered this diagnosis, but improperly
vision, clumsiness, confusion or cogni- of the rheumatologist’s review of terminated diagnostic investigation on
tive impairment, motor or sensory systems - the narrative of the patient the basis of blood work. When I ex-
symptoms. However, all patients with remains the most important part of amined her, her lips were chapped,
myelitis or other neurologic syn- the diagnostic process. By the time I there were no saliva bubbles under the
dromes similarly require and deserve a have completed a rheumatological tongue. A small biopsy of the lip con-
rheumatologist’s review of symptoms. review-of-systems, the likelihood of firmed the diagnosis of Sjogren’s syn-
underlying rheumatic disease has drome, and she was started on appro-
Lupus poses a formidable diagnostic crystallized, and awaits confirmation priate therapy.
challenge, as it can affect the skin, or repudiation by the physical exami-
heart, lungs, kidneys, as well as the nation. By the conclusion of the history and
neurologic system. When I screen pa- physical examination, I might have a
tients for the presence of lupus, I need IV. Example of the rheumatolo- reasonable suspicion about whether
to consider the potential involvement gist's physical examination myelitis or other neurological syn-
of all of these organs. This leads to an dromes are manifested in the context
exhaustive list of questions not usually Any myelitis patient is familiar with of rheumatic disease. I might then or-
encountered in the neurologist’s re- the rhythm and detail of the neu- der specific blood tests to further cor-
view of symptoms: Has there been any rologic examination. However, the roborate or repudiate my diagnostic
joint pains/joint swelling/joint rheumatological examination has a impression. A key point worth empha-
warmth? Any morning stiffness? Any similarly meticulous sensitivity for sizing is that such blood tests only
episodes of fingers or toes turning blue subtle findings. Sjogren’s syndrome serve to enhance or blunt my clinical
in cold weather? Any hair loss? Any is characterized by inflammation of diagnostic impression, but never sub-
rashes? Any oral or genital ulcers? the glands causing salivary produc- vert the saliency of the history or
Any history of shortness of breath, any tion in the mouth. I therefore spend physical examination. In effect, there
pain on deep inspiration? Any history time looking under the tongue, look- are no blood tests for lupus,
of dry eyes or dry mouth? Any prob- ing for any deficiencies of salivary Sjogren’s syndrome, or other auto-
lem swallowing? Any worsening of production. I palpate the cheeks, immune disease. Any rheumatologic
rashes or fatigue on exposure to feeling for any swelling or nodularity disease, like multiple sclerosis or De-
sunlight? Any burning in the fingertip of the salivary glands. All of the vic’s syndrome, is a clinical diagnosis,
or toes? rheumatic disorders can cause in- imbued by the hierarchy and impact of
flammation of the smallest blood a patient’s symptoms. Therefore, any
Frequently, patients can be initially vessels. Such capillaries are clus- myelitis patient who undergoes blood
overwhelmed by the number of ques- tered around the nail beds, and I of- screening tests as an exclusive diag-
tions. What can difficulties with swal- ten spend minutes looking at nails, nostic step for rheumatic disease is be-
lowing have to do with sudden paraly- looking for any corkscrewing, twist- ing shortchanged, as each symptom
sis and incontinence? They often de- ing, or other abnormalities of nail needs to be chronicled and rigorously
mur that prior neurologist evaluations bed blood vessels. The scalp is ex- investigated.
have never led to this cavalcade of amined for patchy hair loss. The
questions. A critical goal is to explain joints are maneuvered, palpated, VI. The prognosis and therapeutic
the hidden unrelatedness of these ques- ranged, felt for heat, examined for implications of detecting underlying
tions; part of the elusiveness and com- structural deformities. The edge of rheumatic disease
plexity of any rheumatic disease is that finger tips are examined for ulcers,
the pathophysiologic process is as pitting, or loss of digital pulp, skele- When should a patient with myelitis be
concerned for underlying rheumatic lens. For the patient, this leads to the Curbside.MD: Searching for
disease? Here is my simple answer: confusing and apprehensive process Information about the
Every single time. Any new diagnosis of reciting similar symptoms, and re- Neuroimmunologic Disorders
of myelitis deserves a thorough clini- ceiving discrepant or even conflict-
cal and physical examination for de- ing interpretations. By bridging the
tecting underlying rheumatic disease. gap between the disciplines of Neu- It is my pleasure to bring to your atten-
Any new flare of myelitis, or any ex- rology and Rheumatology, the con- tion an extremely promising search
ample of myelitis becoming intractable venience offered by a cross- engine for those determined to find the
or less responsive to previous adequate disciplinary evaluation in a single di- most relevant, complete and up-to-date
therapy also deserves a more intensive agnostic center will hopefully allevi- information on Transverse Myelitis
evaluation for underlying rheumatic ate patient concerns. We anticipate and the other rare neuroimmunologic
disease. Diagnoses of multiple sclero- evaluating the following group of pa- disorders. For years, it has been diffi-
sis are unsatisfactory and invalidated tients: cult to find state-of-the-art medical
in the absence of considering alterna- information on these disorders. Even
tive rheumatological explanations. As (1) Patients with a diagnosis of mul- experienced neurologists may not have
illustrated above, the most seemingly tiple sclerosis, but who have symp- the case experience to accurately diag-
mundane and seemingly incidental toms or signs of rheumatological dis- nose and treat rare disorders like trans-
symptoms are often crucial in elucidat- ease. verse myelitis, neuromyelitis optica
ing subtle symptoms of systemic in- (2) Patients with relapsing myelitis, and acute disseminated encephalomye-
flammation. or a history of Devic’s syndrome, litis. The challenge, particularly for
since these syndromes have a higher physicians, is to find the right medical
Detection of underlying rheumatic dis- risk of underlying rheumatological information, at the right time, within
ease is important, especially as recent disease. the right patient context.
work has illustrated that syndromes, (3) Patients with possible
such as lupus and Sjogren’s syndrome “antiphospholipid antibody syn- For the past several months, this unmet
are risk factors for underlying rheu- drome.” This is a syndrome charac- need has been tackled by The Trans-
matic disease. Although distinguish- terized by clots in the arteries or verse Myelitis Association in a unique
ing myelitis occurring in demyelinat- veins, and is associated with specific partnership with Praxeon, a Boston-
ing disease (i.e., multiple sclerosis, antibodies on blood tests. Antiphos- based healthcare startup. This month
Devic’s syndrome) from rheuma- pholipid antibody syndrome can be we announce the debut of Curb-
tological syndromes can pose a diag- associated with all rheumatic dis- side.MD (www.curbside.md), the first
nostic challenge, this distinction is cru- eases, and can sometimes occur inde- medical search engine devoted exclu-
cial. In some cases, the treatment for pendently. sively to neurologic disease.
multiple sclerosis (i.e., the interferons) “Curbside” refers to the medical prac-
may cause relapse of underlying rheu- In the next TMA Newsletter, I will tice of the curbside consult where phy-
matic disease. Additionally, the treat- elaborate on proposed research stud- sicians informally ask each other for
ment for the myelitis of rheumatic dis- ies which will be conducted based on advice on clinical questions. Praxeon
ease are immunosuppressant drugs, the clinical experience of the Johns set out to replicate that model online,
such as Cyclosphosphamide, Meth- Hopkins Clinic for Neurological enabling medical professionals to pose
otrexate, and Imuran, which are not Rheumatic Disease. naturally phrased queries to real clini-
usually the first-line agents for multi- cal questions, and to get an answer
ple sclerosis. In summary, I want to emphasize from the best of evidence-based medi-
that my goal is to continue interact- cine. Curbside.MD achieves this goal.
VII. Whom should be evaluated at ing with patients and Neurology/ Medical experts can get evidence-
the Neurological Clinic for Rheu- Rheumatology Colleagues. As such, based answers to real, naturally
matic Disease I welcome any inquiries or questions. phrased medical questions. Curb-
Please do not hesitate to contact me side.MD utilizes a unique semantic
In my experience, patients with poten- by email at jbirnba2@jhmi.edu for fingerprinting technology to enable
tial neurological rheumatic disease are any clinical or personal concerns. search around complete sentences and
fatigued by the process of being sepa- even paragraphs of medical informa-
rately evaluated by individual Neu- tion. Users are guaranteed accurate
rologists and Rheumatologists. Inevi- and relevant results from only the best
tably, each specialist approaches evidence-based information available.
symptoms by a restricted diagnostic
And best of all, this is a free site open search engines, Curbside.MD is a nificant causal factors and disease
to everyone. free site open to everyone. trends for demyelinating disorders,
such as Multiple Sclerosis (MS),
Curbside.MD represents a fundamen- Go to www.curbside.md and just Transverse Myelitis (TM), Optic Neu-
tal innovation within medical search type a question in the search box. ritis (ON), Devic’s Syndrome (NMO),
and health informatics and embodies a And don’t limit yourself to key- Acute Disseminated Encephalomye-
number of unique features not found words; challenge Curbside.MD with litis (ADEM) and other related dis-
within other search engines that en- a complete thought or question, even eases.
ables rapid identification of the right a paragraph of something you’re in-
clinical answer. The core technology terested in. We think you’ll be im- Several major academic centers lo-
is an underlying model embedded pressed with the results and the po- cated throughout the country will serve
within the language of medicine. This tential for this new website. Here are as coordinating project sites, creating a
enables the search engine to specifi- some sample questions to start you national network of collection sites.
cally understand medical terms and off: Study enrollment is targeted at 10,000
their abbreviations, synonyms and hi- subjects over ten years. Enrolled sub-
erarchical relationships. Results are “Is the neuromyelitis optica IgG jects will be asked to contribute per-
organized intuitively into two major status of acute partial transverse sonal data (such as medical history and
categories: Quick Consult with broad myelitis predictive of longitudi- family information) and biological
overviews for the novice; and Best nally extensive transverse mye- samples. The personal data collected
Evidence with in-depth focus for ex- litis?” http://www.curbside.md/ from all subjects will be combined into
perts. Users may also delve deeper focus/211 a single database, while the biological
into the literature with analytical tools samples will be processed at a central
that extract disease and drug terms for “What is the diagnostic workup laboratory and stored. The complete
rapid sorting by utilizing the Special- required to distinguish a spinal anonymity of study participants will be
ize option. In addition, Curbside.MD epidural abscess from transverse protected. The result will be the crea-
provides medical images, video, and myelitis?” http://www.curbside.md/ tion of a comprehensive information
radiographic scans relevant to the curbside/entry_page/758 system and specimen repository from
questions asked. which researchers can request samples
Go ahead and give Curbside.MD a to conduct in-depth analyses on vari-
In the coming months, Praxeon plans try. Curbside.MD is encouraging ous disease aspects. This study will
to supplement Curbside.MD with a you to provide them with feedback play an important role in increasing
physicians’ forum. In the Curbside during your search experience so that the current knowledge of demyelinat-
forums, doctors and patients will be they can continue to enhance the ef- ing diseases and therefore aid re-
able to consult on difficult cases, while fectiveness of this unique search tool. searchers in the development of better
simultaneously reviewing medical evi- You can also find the Curbside.MD diagnostic techniques and cures for
dence – relevant to their conversation search tool on the main page of the these diseases.
– in real time. This will represent a TMA web site.
tremendous advance in information We are enrolling patients with multiple
seeking for physicians treating all neu- Recruiting for ACP Study: Help us sclerosis, transverse myelitis, optic
rological disorders, including the rarest to Find the Causes and Cures for neuritis, acute disseminated encepha-
ones. They will have the opportunity TM, ADEM, NMO, MS, ON and lomyelitis, neuromyelitis optica
to share their anecdotes, experiences the other Neuroimmunologic (Devic’s) or clinically isolated syn-
and insights with treatment – within an Disorders dromes (one demyelinating attack, but
evidence based context. For more de- Jana Goins not fulfilling the diagnostic criteria for
tails on the forum and other updates to MS). Those who are currently patients
the site, or to post your own com- at Johns Hopkins will be able to join
ments, check out the curbside blog at the study without a referral from their
http://blog.curbside.md. The Johns Hopkins University is physician, and will just need to contact
working in conjunction with the Ac- the Johns Hopkins project coordinator
Curbside is considered the best neuro- celerated Cure Project for Multiple for study enrollment information.
logical search engine on the web. And Sclerosis (ACP) to conduct a large- Johns Hopkins patients who are aware
unlike subscription-based medical scale research study which will play of their next scheduled clinic date may
an important role in determining sig- get in touch with the project coordina-
tor beforehand in order to schedule a
study meeting during this clinic visit.
Subjects participating at Johns Hop-
Participating Centers
Support Groups
kins will be offered a $25 check to Johns Hopkins Medical Institution
compensate for lunch and parking on (Baltimore, MD)
the day of the visit, but will not be re- Jana Goins Sharecare4u Ghana
imbursed for any travel expenses. At acp-study-hopkins@acceleratedcure.org
(410)502-6160 The Ghana Support Group for Rare
this time, patients receiving care out-
side of Johns Hopkins may be subject Neuroimmunologic Diseases
to additional enrollment requirements. UMass Memorial (Worcester, MA)
Janice Weaver I started thinking about a support
Please note, the enrollment require- acp-study-umass@acceleratedcure.org group for people in a similar condition
ments and participant compensation (508)793-6562 to mine one year after I fell ill. It’s
may vary by study site. If you are in- taken ten years, however, to see the
terested in getting involved, please Shepherd Center (Atlanta, GA) beginnings of this dream, because of
contact your nearest participating cen- Elizabeth Iski relapses and general weakness.
ter for further information regarding acp-study-shepherd@acceleratedcure.org
the enrollment process. (404)350-3116 My name is Nana Yaa Agyeman and
I’m from Ghana in West Africa. I am a
In addition to enrolling subjects with University of Texas Southwestern 46 year old woman and was diagnosed
one of the specified demyelinating (Dallas, TX) with acute demyelination of the cervi-
diseases, we are asking participants to Gina Remington cal cord in 1996, which was at various
refer affected and unaffected relatives acp-study-utsw@acceleratedcure.org stages thought to be Guillain Barre
as well as unaffected matched (214)645-0560 Syndrome, Neuro-schistosomiasis,
“controls” (such as a childhood friend Multiple Sclerosis and Devic's Disease
who grew up in the same area as you Multiple Sclerosis Research Center (Neuromyelitis Optica).
or a spouse) for participation in the of New York (New York, NY)
study. Lauren Puccio Over the ten year period, I have gone
acp-study-msrcny@acceleratedcure.org through symptoms of paralysis with
ACP has recently obtained approval to (212)265-8070 ventilator support; I have been in a
enroll pediatric cases into the reposi-
wheelchair; I have had relapses and
tory. If your child has one of the Barrow Neurological Institute partial blindness; and I have made a
neuroimmunologic disorders identified (Phoenix, AZ) recovery of sorts. I’m now able to
above, please consider having them Breanna Bullock walk unaided indoors and with an aid
participate in this important study. acp-study-barrow@acceleratedcure.org outdoors. My eyesight has improved.
The following centers are currently (602)406-3109 My eyes still cloud over in hot
able to accept pediatric enrollment in
weather, which means every afternoon
ACP: Johns Hopkins School of Medi- Study Sponsor since Ghana is in the tropics. My full
cine, Multiple Sclerosis Research Cen-
story can be found at the sharecare4u
ter of New York, University of Massa- Accelerated Cure Project website, which is a platform for all
chusetts Medical School Multiple Sara Loud, Repository Director people with long-term illnesses to
Sclerosis Center, University of Texas 300 Fifth Avenue share their experiences and treatment
Southwestern and Barrow Neurologi- Waltham, MA 02451 options.
cal Institute. acp-study-director@acceleratedcure.org
(781)487-0032 We only got an MRI scanner in Ghana
This is a very exciting opportunity for www.acceleratedcure.org
both patients and researchers around last year, and after having the scan, the
the country to take part in a large-scale impression was Multiple Sclerosis, but
Neuroimmunologic Disorders Sam- my neurologist said it could be De-
dynamic project that will work to imple Repository:
prove our knowledge about demyeli- vic’s Disease. The diagnostic test to
http://www.acceleratedcure.org/ confirm this is not available in Ghana.
nating diseases. By volunteering your curemap/tissuebank.php
time and effort to this project, you will From 2003 (when the only practicing
be making a significant contribution to neurologist returned to Ghana from
the development of new treatments, specializing), 1,800 people have been
and ultimately a cure, for these dis- diagnosed with MS and other demyeli-
eases. nating diseases. I discussed this and
the absence of the test for NMO with a Council on Persons with Disability, puter keyboard, to tell time, to read or
web pal and have her permission to to coordinate groups such as ours. write, or even to draw stick figures be-
quote her reply to me: This has not yet been set up. The yond juvenile efforts. That I couldn’t
Act gives owners of public buildings walk was the least of my deficits.
I was thinking about the MS statis- ten years within which to make their
tics. For example, it is more common buildings accessible to disabled peo- Ironically, I never lost my ability to
in women then in men; it usually oc- ple. The time frame given them spell; but I couldn’t remember the
curs in the 20-40 age group; it is more could certainly be debated. birth dates of my grand kids. My
common in the white race than in the sense of humor remained firmly intact;
black race, and rare in the Asian race. The immediate task is getting people through three consecutive hospitaliza-
It is more common in thin framed peo- to join the group. The neurologist tions, multiple MRIs, and an uncon-
ple. It is less common in tropical ar- who is the patron of the support firmed diagnosis. The neurologist at
eas, and more common in cold climate group has been linking me with other the first hospital I went to discharged
areas. I have also heard of people be- patients with rare neuroimmunologic me in five days with a “brain condi-
ing diagnosed in their 50’s who have diseases that are interested in a sup- tion” and without any medication.
never had symptoms before. With De- port group. I have been paying home This was his primary diagnosis on my
vic’s I hear that it is more common in visits to them to share the various discharge summary. He was more in-
Asians and in the tropical areas. After stages we have gone through and terested in referring me to his sleep ap-
going over all of this in my head (must why we should get this group going. nea clinic. My MRI showed that I had
be the scientist in me), I can see why We are also preparing flyers so that 13 brain lesions.
research is needed on this. Many MS others can contact us.
patients may really have Devic’s. The Other than a hospitalization due to a
test needs to be offered everywhere so The Ghana support group would ap- near-fatal car accident ten years ago,
that all MS patients can be tested to preciate tips from established support and for pneumonia before that, my
rule out Devic’s. groups. You can be sure that I will health has been fairly uneventful, for
constantly learn from other groups, which I am very thankful. How can
Sharecare4u Ghana, the Ghana support especially with regard to fund- one possibly imagine having this hap-
group of The Transverse Myelitis As- raising. Please feel free to get in pen to them? I am interested in start-
sociation, which is still in the forma- touch with me. ing an ADEM support network. If you
tive stages, aims to create awareness have ADEM or if you are a family
about the existence of these neuroim- Nana Yaa Agyeman member or caregiver, I hope that you
munologic disorders. They have only P.O. Box CT4910 will get involved. It is important that
recently been found in this country Cantonments we find each other for the purpose of
giving rise to speculation about the Accra offering information and support. We
causes, such as imported foods and ad- Ghana also need to be there for those who
ditives, pesticides, chemicals in the Tel: 233-21 220084 will receive the ADEM diagnosis in
water and environmental factors. The Cell: 233-20 815 7404 the future. If you are interested in par-
support group will advocate for re- Email: sharecare4u@gmail.com ticipating in this support network,
search into these diseases and raise Website: www.sharecare4u.com please get in touch with me.
funds for this research.
Barbara Kreisler
We will also act as an advocacy group
to put pressure on local and national
The ADEM Support 9476 Scarlet Oak Dr
Manassas, VA 20110
health authorities to treat neuroimmu- Group (Home) (703)753-4000
nologic diseases with the seriousness (Cell) (571)436-9034
deserved in the national health care de- I’m a writer and former journalist. I bkreisler.imprint@verizon.net
livery system. ordinarily describe myself more by
my professional accomplishments
One of our major aims is to join other than my personal ones. That is why
disability groups to push for the imple- this communication is unusual for
mentation of the Disability Act of me. My personal perspective
Ghana. The Act was passed in August changed when my health did in June
last year, but we are yet to see any 2006. I lost my ability to use a com-
changes. It establishes a National
health insurance at the time. We than Chronic Optic Neuritis. Some-
managed to pay cash for the first one times I feel frustrated that no doctor, to
and it was perfect; no lesions, no this point, has been able to tell me why
MS. this is happening. The reality of losing
a little more of my vision with each
The doctors treated me with IV ster- new attack sometimes seems over-
oids at a hospital in the city. The whelming. Depression seems to go
The Optic Neuritis treatment was worse than the vision
problems. I had steroid induced psy-
hand in hand with this condition for
me. I have been battling ever since my
Support Group chosis. What a nightmare. On the first attack.
second day of steroid treatment, I
My name is Kristin Lee. I am 32 years lost it in the hospital, removed my This is my journey. I have not been
old and have been married for almost own IV, left the hospital, and began able to find anyone else with Optic
11 years. I have been blessed with two walking in this city with no idea of Neuritis as their diagnosis. People
beautiful kids who are now 9 and 10. I where I was or where I was going. I with Optic Neuritis often have it in the
have had Optic Neuritis for more than began having daily panic attacks and context of MS or NMO. Finding The
four years. I cannot say that it all was unable to leave my bedroom for Transverse Myelitis Association has
started with a dramatic episode that days. I lost 12 pounds. I had to start been great for me and hopefully I can
caused me to be rushed to the local seeing a psychiatrist. find others who are experiencing simi-
hospital. It actually was quite by sur- lar circumstances. Having a good sup-
prise that I even realized I was having After about three months, the major- port system is the key to staying posi-
problems. ity of my vision returned. Time had tive. I hope you will get involved in
passed and all of the neurologists our Optic Neuritis Support Group.
I was at the local mall doing some seemed to think it was just a fluke Please get in touch; we would love to
shopping with my children. I had been and would not happen again. Well, hear from you.
having problems with my right contact about 6 months later, I had a second
lens; it seemed to have a tear or some- attack on my right eye this time. It Kristin Lee
thing stuck to it causing me to see a was the same drill; IV steroids again, 115 Ridge Avenue
blind spot out of that eye. My optome- but this time with nerve medicine to Beaver Falls PA 15010
trist’s office is located in the mall, so I keep the anxiety in check. This cycle (724)847-7999
decided to stop in without an appoint- has continued for over 4 years, and I kmarie1016@hotmail.com
ment to buy a replacement lens. My have had more attacks than I care to www.onsupport.info
doctor insisted that she take a look at keep track of or count. I have severe
my eyes just to make sure that it was bouts of fatigue and summers are Jenn Nordin will be working with
the contact lens causing the problem. long with the heat and humidity. We Kristin in the ON Support Group. We
After the examination, she said I try to stay by the pool and avoid encourage you to get involved and to
needed to call someone to pick me up, amusement parks, zoos or any out- get in touch with both Kristin and
because I should not be driving. She door activities during the hot months. Jenn.
told me that my optic nerve was My body does now seem to be more
swelled and that I would need to have tolerant of the steroids. I also have a Jenn Nordin
an MRI immediately. An MRI for home health nurse who does the 417 Yorktown Avenue #1
what? I mean I just came in for a con- treatments at home, so it keeps things Huntington Beach, CA 92648
tact lens, right? more normal for my family. Cell: 714-231-1808
Jenn@jenndesigns.com
After some explaining that this was se- As far as other symptoms go, I also
rious, my doctor told me that this was have complete heat intolerance. If I
a sign of MS. Well, I felt lost, scarred, raise my core temperature, I loose
and confused. I had to keep it to- my vision in my right eye com-
gether; I had my kids with me. After pletely. I often have a lot of fatigue.
getting more information on what was I get swelling in the joints of my
happening with my eye, the stress of hands and feet, as well as a burning
the situation really started. I was told sensation and I have severe and fre-
an MRI was imperative, but I had no quent migraines. To date, I have not
received any other diagnosis other
ADEM, NMO, ON, Recurrent UK TM Conference in Southwest Symposium on
TM, TM with Lupus,
Sarcoidosis, Sjogren’s and HIV: London, Saturday 13th Neuroimmunologic
October 2007 Disorders: Presentations
Finding Each Other to Share
posted on First Step
Information and Support
Douglas A. Kerr, M.D., Ph.D., Di-
Foundation and TMA Web
We are trying to assist people who rector of the Johns Hopkins TM Cen- Sites
have the very rare neuroimmunologic ter and Project RESTORE and mem-
disorders find each other for the pur- ber of The Transverse Myelitis Asso- The Cody Unser First Step Founda-
pose of sharing information and sup- ciation Medical Advisory Board will tion, the New Mexico Governor’s
port. We are creating the lists identi- be speaking at the first UK TM Con- Commission on Disabilities and the
fied below for that purpose. If you ference on Saturday 13th October University of New Mexico School of
have one of these disorders and would 2007. Other UK speakers will in- Medicine held the first Southwest
like to be added to the list and then re- clude a rehabilitation consultant who Symposium on Neuroimmunologic
ceive a copy of the list, please send us will present information about the Disorders, April 26-28, 2007 in Albu-
your information. I only share these management of TM symptoms. querque, New Mexico. During the
lists with people who are willing to be There are members who are already two and a half day symposium there
added to the lists. planning to attend from England, were excellent presentations made on
Scotland, Ireland, Germany and Aus- all of the neuroimmunologic disorders,
1. Acute Disseminated Encephalomye- tralia. We hope that more of you the acute treatment approaches, reha-
litis (ADEM); will plan to come from across bilitative therapies, the research into
2. Neuromyelitis Optica (NMO) or Europe. The capacity of the room is restorative therapies and the treatment
Devics disease; 150 people, so please make your options for the many difficult symp-
3. Recurrent Transverse Myelitis; plans as soon as possible. The Con- toms of these disorders. The presenta-
4. Transverse Myelitis with SLE ference is FOC/gratis for members, tions were videotaped in order to make
(Lupus). except for a small charge (20 this critical information available to
5. Transverse Myelitis with Sarcoido- pounds / 30 Euros) to cover lunch people who were unable to attend the
sis; and the venue. For more information symposium. We urge you to watch
6. Transverse Myelitis with Sjogren’s and to sign up for the conference, these videos, as all of this information
syndrome please send an email to Lew Gray at: serves to help you become a more ef-
7. Transverse Myelitis or NMO with lewgray@blueyonder.co.uk. We are fective advocate for your medical care.
HIV; and compiling questions that we will ask You can view the videos at:
8. Optic Neuritis. the speakers during the conference. www.myelitis.org/swnds2007 or
If you have a question that you http://cufsf.org/. The videos may be
If you are interested in being added to would like addressed by the speak- purchased by using the form included
one of these lists and then periodically ers, please also send your issues or with this newsletter or by downloading
receiving a copy of the list, you can concerns to Lew Gray. We are look- the form from Cody’s or the TMA
send me your contact information ei- ing forward to seeing you at this Web Sites. The Transverse Myelitis
ther by email or through the postal ser- wonderful opportunity in London Association and our membership are
vice. Please send me your full name, this October. grateful to Cody and Shelley Unser
complete postal address, phone num- and the First Step Foundation for
ber and email address (if you have working to organize an exceptional
one). Be sure you clearly identify to educational and support opportunity
which list you would like to be added. Transverse Myelitis for people who have these disorders,
Sandy Siegel
Society their family members and the physi-
cians who treat people with these dis-
1787 Sutter Parkway orders. We would also like to thank
Powell OH 43065-8806 Dr. Leslie Morrison from the Univer-
USA sity of New Mexico for all of her ef-
ssiegel@myelitis.org forts in putting together such an infor-
mative program agenda with out-
standing speakers.
tion of the application as soon as you Journal. The newsletters are not in-
have it completed. Do not wait for cluded in the new membership pack-
the physician section; that portion ets.
can be sent in later. There could be
cancellations, but at the present time, We encourage people to read the pre-
there may be only two openings viously published newsletters and
available for the 2007 camp. journals. They are an excellent source
of information about the neuroimmu-
Your point of contact at Victory nologic disorders, both through articles
Junction Gang Camp regarding the written by medical professionals and
application process is Kristin Wol- by people with these disorders and
bert. Kristin can be reached at: (336) their family members, which describe
495-2002; her email address is kwol- their personal experiences. Through
bert@victoryjunction.org. these publications, you can also learn
about research and clinical trials, the
Details about the application process, TMA, awareness and fundraising ef-
travel arrangements and the Victory forts, and the support groups around
Junction Gang Camp may be found the country and around the world.
on the VJGC web site and also in
articles that have been published in All of the newsletters and journals are
previous newsletters and journals. archived on our web site; you can find
Please refer to the TMA newsletter them under the link ‘newsletters’ on
archives for this information. the main page of our web site or you
can type www.myelitis.org/
If you are interested in coming to newsletters/index.html into your web
VJGC TMA family week, but are not browser. You can view the newslet-
able to do so in 2007, please get in ters and journals as they were pub-
touch with me lished by selecting the PDF files from
The summer family camp for kids with (ssiegel@myelitis.org) and I will be the column on the right, or you can
TM, ADEM, ON and NMO will be sure to add you to our list for recruit- view them in html format from the
held from August 19 to August 24, ing purposes. Victory Junction Gang column on the left. The html files in-
2007 at Victory Junction Gang Camp. Camp has committed to holding a clude an index which makes it very
The camp is for kids with these neuro- TMA family camp every other year. easy to find articles covering specific
immunologic disorders who are 7 - 15 Once you are added to our recruiting subjects. Additionally, Jim has in-
years old and their siblings and par- list, you will be contacted by the stalled a search engine for the entire
ents. The maximum capacity of the TMA as soon as the application proc- TMA web site, which allows searching
camp for our week is 32 families. We ess is initiated for the next camp. for specific subjects. Topics may be
currently have about 30 families who searched in the newsletters and jour-
have applied from around the world. nals by using the search engine.
If you have an interest in coming to
camp in 2007, you will need to send in The TMA Newsletter and If you have difficulty in finding infor-
an application immediately. mation about any topic on our web
Journal Archives site, and the search engine does not
There are two applications that you provide you with the results you were
will need to fill out and submit to the The TMA announced a new publica- seeking, you should always feel free to
camp: tion schedule and format for our contact Jim for assistance. You can
newsletters and journals. A newslet- send Jim a question or a request for
http://www.victoryjunction.org/ ter will be published each fall and help at jlubin@myelitis.org
aa_apply/apply05_application.html spring, and a more extensive journal
will be published in January of each
There is a medical section of the appli- year. When people sign up for mem-
cation that will need to be filled out by bership in the TMA, they receive a
your doctor. Please send in your por- packet of information which contains
the most recently published TMA
Fundraising and Awareness

Helping to Fund the Work of iGive.com
Your TMA You can shop at more than 650 stores
through iGive.com. You can find
The TMA does not charge member- books, CDs, videos, software, office
ship fees. We operate exclusively on supplies, groceries, gifts, flowers,
the basis of the generous and voluntary cookware, greeting cards and more at
support of our members. There are the iGive Mall and from top merchants
numerous ways for everyone to help like Barnes & Noble, Drugstore.com,
support the TMA, even if you are not Harry and David, Best Buy, Sharper
in a position to make a financial con- Image and Dell.
tribution. Please consider getting in-
volved in one of our fundraising ef- Café Press
forts. You can purchase TMA logo items
through Café Press.
Donate your cell phones Reading for Rachel
You can donate your cell phones to If you are a teacher, a student or a Amazon.com
help raise funds for The Transverse parent of a student and would like to You can shop at Amazon.com for
Myelitis Association. Go to http:// establish the Reading for Rachel Pro- Books, Music, DVDs, Videos, Toys
cellphones.myelitis.org gram in your school, everything you and more.
will need to get the program started
Inkjet Recycling can be found on the Reading for Ra- eBay
The Transverse Myelitis Association chel web site: http:// Now you can sell an item on eBay and
has partnered with a recycling com- www.readingforrachel.org. All funds donate from 10% to 100% of the final
pany to collect and recycle empty ink- received by The Transverse Myelitis sale price to help support the TMA.
jet printer cartridges, and empty toner Association for the Reading for Ra-
cartridges from laser printers and copi- chel Program are used exclusively
ers. All you have to do is visit the for research to better understand TM,
Donations
TMA inkjet recycling page at: http:// to find treatments for the symptoms We always welcome and are grateful
recycle.myelitis.org of TM, and to ultimately find a cure. for a donation to the TMA. You can
If you are interested in starting the download a donation form to include
Reading for Rachel program in your with your check from the link:
Awareness Wristbands www.myelitis.org/donation-form.htm
You can show your support for The school, you can also contact Cathy
Dorocak, Rachel’s Mom and Interna- Please make a check or money order
Transverse Myelitis Association and payable to The Transverse Myelitis
help raise awareness by ordering wrist- tional Chair of the Reading for Ra-
chel Program: Association and mail it to:
bands. To order using PayPal or by
credit card, please log on to the web cathy@readingforrachel.org; (440)
572-5574. The Transverse Myelitis Association
page at: http://www.myelitis.org/ Paula Lazzeri, Treasurer
wristbands.htm You can also order the 10105 167th PL NE
wristbands by sending an email to: line Shopping
Online Redmond, WA 98052-3125
wristbands@myelitis.org or call (951) There are numerous online shopping
658-2689. opportunities, as well as sales on Thank you!
eBay which can be made through the
following link: http://
www.myelitis.org/store.htm A per-
centage of the sales are donated to
the TMA.
Support Group Leaders

ADEM SUPPORT GROUP FLORIDA MICHIGAN
BARBARA KREISLER BRAD HIGHWOOD LYNNE MYERS
(703)753-4000 (772)398-3340 (269)789-0452
BKREISLER.IMPRINT@VERIZON.NET WHEELS1@COMCAST.NET LYNNEMYERS1@YAHOO.COM
NMO SUPPORT GROUP JAMES G JEFFRIES MINNESOTA

GAYLIA ASHBY (352)249-1031 KAREN NOPOLA
GAYLE@DEVIC.ORG.UK MOJIMJEFF@EARTHLINK.NET (612)270-1122
NOPOLA@COMCAST.NET
OPTIC NEURITIS SUPPORT GEORGIA
GROUP CHARLENE B. DAISE DEAN H PETER
KRISTIN LEE (404)289-7590 (651)492 0074
(724)847-7999 CDAISE@BELLSOUTH.NET NEUAUBING1962@YAHOO.COM
KMARIE1016@HOTMAIL.COM
IDAHO DARIAN VIETZKE
JENN NORDIN JOHN CRAVEN (763)755-3515
(714)231-1808 (208)939-7968 VIETZKE@MYELITIS.ORG
JENN@JENNDESIGNS.COM JSCRAVEN@MSN.COM
MISSOURI
ALASKA ILLINOIS RHONDA LOGGIA
PATRICK & JENNIFER LEMAY NICOLETTE GARRIGAN (636)537-8471
(907)274-4180 (773)774-6554 RLOGGIA@AOL.COM
LEMAY@GCI.NET DUCKPRINCESS5778@AOL.COM
NEVADA
CALIFORNIA JEANNE & THOMAS HAMILTON MARY WOLAK
DEBORAH CAPEN (847)670-9457 (702)645-3657
(951)658-2689 TOMBONE2@MSN.COM NOTAHORSE4@AOL.COM
DCAPEN@MYELITIS.ORG
KENTUCKY NEW ENGLAND TRI-STATE
CINDY MCLEROY ANDY JOHNSON AREA SUPPORT GROUP
(741)638-5493 (859)552-5480 KRISSY ZODDA
CINDYMCLEROY@SOCAL.RR.COM ANDY.JOHNSON@UKY.EDU (603)589-1894
TMLADYK@YAHOO.COM
NORTHERN CALIFORNIA MAINE
JUDY MELCHER COLLEEN GRAFF NEW YORK
(209)334-0771 CJG@KYND.NET PAMELA SCHECHTER
JUDYMAE@PACBELL.COM (718)762-8463
MARYLAND LITTLEPRINCESS900@
SAN DIEGO ALAN & KELLY CONNOR HOTMAIL.COM
CHRISTINE DAVIS (410)766-0446
DRDAVIS@SDOPTOMETRY.COM RAVENALAN@CABLESPEED.COM SHANNON O’KEEFE
(585)330-1125
COLORADO MASSACHUSETTS SHANNONJOKEEFE@
LAMAR AND DANISE BURKES LESLIE CERIO HOTMAIL.COM
(720)851-8520 (781)740-8421
LDBURKES@HOTMAIL.COM LCCERIO@AOL.COM
NORTH CAROLINA COSSY HOUGH DENMARK
PAUL STEWART (512)420-0904 METTE & THOMAS NYBO
(704)543-0263 COSSYH@YAHOO.COM JENSEN
BRK4YOU@BELLSOUTH.NET 45 76 90 50 75
BARBARA LAMB METTENYBOJ@HOTMAIL.COM
OHIO (817)460-2630
KATHLEEN KAROLY BABBSIE1982@YAHOO.COM GHANA SUPPORT NETWORK
(419)354-7316 NANA YAA AGYEMAN
KKAROLY@DACOR.NET VIRGINIA 233-21 220084
AGNES KILLOUGH SHARECARE4U@GMAIL.COM
STEPHEN J. MILLER (757)422-4024
(937)453-9832 JANDAKILLOUGH@VERIZON.NET GERMANY
SMILLER@MYELITIS.ORG URSULA MAURO
PAMELA NEW 07807 3154
MARGARET MILLER (757)565-6461 UMAURO@T-ONLINE.DE
(614)486-2748 PNEW@MYELITIS.ORG
MAGMIL1336@AOL.COM IRELAND
WASHINGTON & OREGON ANN MORAN
JAMES E. TOLBERT BUD FEUERSTEIN 098-26469
(513)724-1940 (425)398-4365 ANNMORAN99@YAHOO.COM
JIMYT2@ADELPHIA.NET BUDFEUERSTEIN@VERIZON.NET
NEW ZEALAND
LINDA GARRETT MIKE HAMMOND STEVE & ALISON ALDERTON
(740) 674-4100 (360)658-5878 64 3 3857274
LIMOGA43734@YAHOO.COM 3JMHAMMOND@CLEARWIRE.NET SEAL4@XTRA.CO.NZ
PENNSYLVANIA WISCONSIN DYLLICE EASTWOOD

MORGAN & PAMELA HOGE LYNN SEIFERT 649 8109807
(724)942-3874 (715) 442-5205 DYLLICE@HOTMAIL.COM
HOGE5@MSN.COM TMAMNWI@YAHOO.COM
JENNIFER MURRAY
SUE MATTIS INTERNATIONAL 09 834 5019
(814)899-3539 MURRAY_FAM@PARADISE.NET.NZ
BOBSUE6095@ADELPHIA.NET ARGENTINA
MARINA LOPEZ ROMANIA
PUERTO RICO SAUBIDET@CVTCI.COM.AR DAN BUCATARU
YVONNE LUGO DEL VALLE (021)252-5936
(787)312-9711 AUSTRALIA DAN.BUCATARU@YAHOO.COM
MYELITISPR_YVONNE@ IAN HAWKINS
HOTMAIL.COM 61 7 3206 4618 ALINA PARASCHIV
IHAWKINS@FUTUREWEB.COM.AU 722 398 993
TENNESSEE APARASCHIV@MYELITIS.ORG
MARY TROUP ERROL WHITE
(901)213-1698 61 07 3886 6110 SOUTH AFRICA
WORK7DAYS@AOL.COM EAMJWHITE@BIGPOND.COM JENNY MOSS
082 928 3000
TEXAS CANADA MOSS25@MWEB.CO.ZA
ROBERT W. COOK MARIEKE DUFRESNE
(281)528-8637 (514)489-0471 MART UYS
RCOOKHOOK@EARTHLINK.NET MARIEKE@MYELITIS.ORG 012-361-7671
MARTUYS@IBURST.CO.ZA
DAN KILBORN
(403)652-4347
DAN.KILBORN@SHAW.CA
SWEDEN see and West Virginia. If you are a cles by clicking on the authors’ hot-
ULRIKA PETTERSSON veteran and have TM, ADEM or links.
ULPETT@GMAIL.COM NMO and you need assistance with
VA healthcare or benefits issues, Another tremendous resource about
UNITED KINGDOM please contact our office for assis- TM and the other neuroimmunologic
LEW GRAY tance. Our office is located in the disorders is the streaming video that
020 8568 0350 Memphis VA Hospital Spinal Cord Jim has posted on the web site. The
LEWGRAY@BLUEYONDER.CO.UK Injury Service. We can be reached at presentations from the 2001, 2004 and
(800)795-3568 Monday through Fri- 2006 symposia and from the 2002
SALLY RODOHAN day from 800 a.m. to 4:00 p.m. children’s workshop are available un-
020 8883 2721 Please fell free to call, if you have der the link ‘Symposia and Workshop
SALLY@APINFO.CO.UK any questions concerning veteran Information’ or by typing http://
benefits. www.myelitis.org/events.htm into
MARGARET SHEARER your web browser. Jim has the presen-
01292 476 758 Clifton E. Dupree tations organized as they appeared in
MARGARET- Senior National Service Officer each of these symposia and workshop
SHEARER@HOTMAIL.COM 1030 Jefferson Ave. Room 2B143 program agendas. The video presenta-
Memphis, TN 38104 tions are also available by going
GEOFF TREGLOWN (901)523-8990 Ext. 7795 through the Multimedia link from our
01539 434 677 (800)795-3568 main web page or by typing http://
GEOFF.TREGLOWN@BTINTERNET.COM CLIFTOND@PVA.ORG www.myelitis.org/multimedia.htm into
your web browser. The streaming
video from the Southwest Rare Neuro-
Paralyzed Veterans of Amer- immunologic Disorders Symposium,
ica: Benefits Assistance Learning about TM and the recently held in Albuquerque are now
other neuroimmunologic available under the symposia and
workshops link, as well as the Cody
The Paralyzed Veterans of America disorders: Bibliography and
was founded in 1946 and is the only Unser First Step Foundation Web Site.
Videos on www.myelitis.org A link to Cody’s web site can be found
congressionally chartered veterans
service organization dedicated solely under our ‘Additional Resources’ web
For those of you trying to learn about page.
for the benefit and representation of Transverse Myelitis, Chitra Krishnan
individuals with spinal cord injury or has compiled an excellent bibliogra-
disease. Paralyzed Veterans is a dy- phy about TM. Chitra serves on the
namic, broad-based organization with TMA Medical Advisory Board, is the
more than 19,000 members in all 50 Executive Director of Project RE- The TMA Equipment
states, the District of Columbia and STORE and is the Research Coordi- Exchange
Puerto Rico. nator at the Johns Hopkins TM Cen- Darian Vietzke
ter.
We provide services to assist veterans Please get involved in the TMA
in receiving both compensation and/or You can find the bibliography by Equipment Exchange. You will see
pension benefits (monetary in nature), typing this address into your web the link to the Equipment Exchange on
and health care benefits (medical). We browser: the column of links on the main page
also assist with applications for educa- of the TMA web site. The program is
tion and home loan benefits to include http://www.myelitis.org/ intended to assist our community in
assisting dependents of veterans when Bibliography.htm exchanging surplus equipment with
they have entitlement to those benefits. each other for the cost of shipping
Jim has created links from the arti- only. We encourage all of you to be-
The Memphis Service Office provides cles in the bibliography to Medline; gin to list your equipment as soon as
representation to Paralyzed Veteran so when you click on the article cita- possible. The more equipment that is
members in a nine state area; Ala- tion, you can easily get to a copy of listed, the more individuals in our
bama, Arkansas, Western Kentucky, the article to read. Additionally, community will be helped. If you
Northern Louisiana, Southeastern Mis- when you are in Medline, you can have any questions as you begin to use
souri, Mississippi, Oklahoma, Tennes- link to other recently published arti-
the program, please use the help link Medical Advisory Board Chitra Krishnan, M.H.S
on the equipment exchange web Executive Director, Project RESTORE
site. If you have any comments or Gregory N. Barnes, M.D., Ph.D. Sr. Research Program Coordinator
questions regarding the TMA Equip- Assistant Professor of Neurology and Johns Hopkins Transverse Myelitis
ment Exchange, please send an e-mail Pediatrics Center
to exchange@myelitis.org Thank you Divisions of Child Neurology and Department of Neurology
for your support! Epilepsy Johns Hopkins University
Department of Neurology 600 N. Wolfe Street
Vanderbilt University School of Pathology 627 C
Medicine Baltimore MD 21287-6965
Contacting the TMA by Email Room 6114, MRBIII Building
465 21st Ave. South Charles E. Levy, M.D.
Nashville, TN 37232-8552 Assistant Professor, Orthopaedics and
When writing email messages to the Rehabilitation
officers of the TMA or to support Chief, Physical Medicine and Reha-
group leaders, please use TMA, Trans- James D. Bowen, M.D.
MS Center at Evergreen bilitation
verse Myelitis, TM, ADEM, NMO or North Florida/South Georgia Veterans
ON in the subject header of the mes- 12333 NE 130th Lane Suite 225
Kirkland, WA 98034 Health Service
sage. Please be sure to include a title University of Florida
in the subject header. The volume of 1601 SW Archer Road
emails that we receive and the way Benjamin M. Greenberg, MD,
MHS Gainesville, FL 32608
spam filters work makes it increas-
ingly difficult to sort through emails to Assistant Professor,
Department of Neurology D. Joanne Lynn, M.D.
find legitimate messages. Also, if you Associate Professor, Neurology
would like to send an attachment, it is Co-Director, Johns Hopkins Trans-
verse Myelitis Center Multiple Sclerosis Center
always a prudent approach to send an The Ohio State University Medical
email notifying the person that you are Johns Hopkins Hospital
600 North Wolfe Street Center
going to follow up your message with 2050 Kenny Rd Suite 2250
a second email that includes the at- Pathology 627C
Baltimore, MD 21287 Columbus, OH 43221
tachment; and explain the nature of the
attachment. If you want to be sure that Frank S. Pidcock, M.D.
we see it, save it and open it, please Adam I. Kaplin, M.D. Ph.D.
Consulting Psychiatrist, JHTMC Associate Director of Rehabilitation
include a subject header in your mes- Assistant Professor of Physical
sage and use words that will identify Departments, Psychiatry and
Neuroscience Medicine and Rehabilitation and
you as a person interested in contact- Pediatrics
ing the TMA. We appreciate your Johns Hopkins Hospital
Meyer 115 Kennedy Krieger Institute
help! Johns Hopkins University School of
600 North Wolfe Street Medicine
Baltimore, MD 21287 707 North Broadway
Baltimore MD 21205
Please Keep Your Membership
Douglas Kerr, M.D., Ph.D.
Information Current Assistant Professor, Neurology
Director, Johns Hopkins Transverse
Please keep us informed of any Myelitis Center
changes to your mailing address, your Johns Hopkins Hospital
phone number and your email address. 600 North Wolfe Street
To let us know about any changes, Pathology 627C
please fill out a change of information Baltimore, MD 21287
form on the TMA web site: http://
www.myelitis.org/memberform.htm –
just click on the box indicating that
you are changing existing information.
Officers and Board of Directors of The Transverse Myelitis Association

Sanford J. Siegel Deborah Capen Honorary Board of Directors
President Secretary
1787 Sutter Parkway PO Box 5277 Deanne Gilmur
Powell OH 43065-8806 Hemet CA 92544 Founder
(614)766-1806 (951)658-2689 3548 Tahoma Place W
ssiegel@myelitis.org dcapen@myelitis.org Tacoma WA 98466
(253)565-8156
dgilmur@myelitis.org
Paula Lazzeri Jim Lubin
Treasurer Information Technology
10105 167th Place NE Director
Redmond WA 98052 jlubin@myelitis.org
(425)883-7914
plazzeri@myelitis.org
www.myelitis.org
The Transverse Myelitis Association NONPROFIT ORG
U.S. POSTAGE PAID
Sanford J. Siegel POWELL, OH
1787 Sutter Parkway PERMIT NO. 6
Powell, Ohio 43065-8806 ZIP CODE 43065
Douglas A. Kerr, M.D., Ph.D. speaking at the

first UK TM Conference, Saturday 13th October
2007 in London
Victory Junction Gang Camp - TMA family

week , August 19 to August 24, 2007

Newsletter v7n2

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Newsletter v7n2

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Volume 7 Issue 2 Spring 2007

Fundraising and Awareness

Support Group Leaders

NMO SUPPORT GROUP JAMES G JEFFRIES MINNESOTA

PENNSYLVANIA WISCONSIN DYLLICE EASTWOOD

Officers and Board of Directors of The Transverse Myelitis Association

Douglas A. Kerr, M.D., Ph.D. speaking at the

Victory Junction Gang Camp - TMA family

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