From the Editor
Sandy Siegel

My column in this issue of the newsletter is going to conclude with the following statement: The Transverse Myelitis Association advocates for people who have transverse myelitis; recurrent transverse myelitis; recurrent transverse myelitis and recurrent optic neuritis or Devics Disease; recurrent optic neuritis; and acute disseminating encephalomyelitis or ADEM. We have always had people with these conditions in our membership. The TMA was not focused on their issues, nor were we very clear about our role with regard to their concerns. Our murkiness was a reflection of our ignorance, and perhaps also reflected a lack of clear direction from the medical community.

All of these conditions are neuroimmunologic disorders of the central nervous system. Each of these disorders occurs when a person experiences a demyelinating attack at some location in their central nervous system. Multiple sclerosis is also a neuroimmunologic disorder of the central nervous system. Why did I not identify MS in my list of conditions represented by the TMA? Well, the answer to that question will eventually be addressed in this article.

This article starts with the conclusion because I am going to take you on a circuitous journey; much like the experience the TMA has had since 1994. For those of you who need the classic comic book version that proceeds from point A to point B via the shortest route; you just got it in the first paragraph, and you can get on with life. For those of you who are endowed with great patience and have twenty minutes to devote to reading … this article is really about the manifest purposes for medical concepts or definitions and the latent or less explicit purposes of those definitions. The roadmap I will use on this explanatory journey has been heavily influenced by my experiences teaching physical anthropology and also by my education and experience in cultural anthropology, and particularly linguistics and sociolinguistics. Linguistics is the study of language. Sociolinguistics concerns the way people use language and the meanings of communication in particular social contexts.

Two brilliant linguists came up with this really interesting theory that the words we use in a particular language determine the way we perceive the world around us. What they meant was that the categories we use from our language determine how we see our world, and in fact, limit how we perceive our experiences. For those of you who find this to be a totally fascinating idea and would like to read everything they ever wrote, their names were Edward Sapir and Benjamin Whorf. How this all works is probably a great deal more complicated than has been explained by the Sapir-Whorf hypothesis, but there is no dispute that language strongly influences how we perceive our experience. Each culture has a different language. A feature of those languages is that there are words which serve as categories in classification systems. And for the most part, those categories are arbitrary. For instance, there are some societies and cultures in which the language only has three different color categories. Does this mean that the people who were raised in that society with that particular culture and language only see or perceive three different and distinct colors? No, they see the same things that we see. The categories do not reflect what is possible to see; the categories represent what these people define as meaningful from their perceptions. They group the entire range of all perceivable color into only three different color categories. For instance, what we see and define as yellow, orange, brown and red they group into one category because the distinctions between these gradations of color are not meaningful to their way of life.

Another great example and one which demonstrates the arbitrariness of categories is the system for defining relatives. In American society, all of our first cousins are related to us in the same way regardless of whether they are related through your mother's or father's side of the family. In some societies, there are two very different classes of first cousins. The one type of cousin is called by a term which means brother or sister; they are considered brothers or sisters and are treated as such. The other type of cousin represents the group from whom you are supposed to select your wife or husband. In our culture, it is frowned upon to marry a first cousin, and we do not think of cousins as being the same as our brothers and sisters. Every society has its own kinship classification system, and there are tremendous differences between these systems. Of course, the American system is the correct system and everyone else in the world is dazed and confused. And of course, they all think the exact same thing about us! Isn't diversity lovely.

How we classify the universe around us with our language does reflect our way of life. Our language and our way of life and the way we think of the world around us are all inextricably bound. To the Inuits who live in the Artic and Subartic snow is central to their world and way of life. There are twenty-two words in their language to describe different kinds of snow. In American English we can describe a type of snow as "the kind that has just the right amount of wetness to make a great snowball." The Inuit language has a single word to describe this kind of snow. Do our words and the way we develop categories influence how we perceive the world? Can you even think of twenty-two different kinds of snow? Snow is not as meaningful to us in our physical and social environment, so we don't need all of those categories. Colors are very meaningful to us, so some paint companies actually sell 140 different shades of white.

A very personal example and one which provides some insight as to how classification or the development of categories works in our language and culture comes from my grandfather. My Zadie was raised in a small village in the Ukraine just outside of Kiev. The people who lived in these villages were peasants. These people were very poor. If you've seen Fiddler on the Roof, it was like that, but without the orchestra and great music. My grandfather knew some Russian because he had been forced to serve in the Czar's army. But his first language, his native language, was Yiddish. At this time, Jews were not permitted to attend the Russian schools and they were isolated from the rest of Russian society. His world was one of horse drawn carts, shacks with no electricity or plumbing and dirt floors. My Zadie came to America during the Pogroms; when they started killing the Jews and burning down their villages, for a change. He came to America as an adult. His native language was not filled with many categories for technology, because his technological world was very simple. He learned English, he learned enough of our culture to be a participant, but he never fully assimilated. He went from dirt shacks in a peasant village to watching a man land on the moon on his television set; yet, he never learned how to drive a car.

In American culture technology is central to our way of life. We have an enormously complicated language to define our technology with literally thousands of concepts to describe it. My Zadie called everything that had an engine a machine. From his world view and his perceptions of the universe, what mattered was that it had an engine and was classified as a machine or it didn't have an engine and was something else. He asked me to cut his lawn with a machine. He asked me to pick him up in the machine to take him to the store. I knew the machine he was talking about from the context of his request. What was meaningful to my Zadie in his classification of technology was the presence or absence of an engine. And, yes, we went to the moon in a machine, a very sophisticated machine.

Where the heck is he going? Hang on, it's going to get worse. Okay, our language and culture provide us with a way to categorize our experience, and these categories influence our perceptions and the way we think about the world around us.

One of the all-time great accomplishments of humankind, after the invention of Chinese food, was Karl von Linne's classification of the plant and animal kingdoms. Linne' was a Swedish botanist who developed a taxonomy that organized all of the known plant and animal types based on a comparison of the similarities and differences of their characteristics. He grouped the categories based on the types of characteristics they shared and based on the characteristics that distinguished them from other groups. Ultimately, he defines a specific plant or animal based on an entirely unique set of characteristics. No other plant or animal possesses the same set of characteristics. Humans share characteristics with all other animals, a fewer number of characteristics with all other vertebrates, a fewer number still with all other mammals, and so forth. But humans have a complete set of characteristics that are unique to only humans, and which distinguish us from all other animals.

Karl was a very cleaver and a very organized person. I would bet that the things in his house were all lined up with the true meridian, as they are in my house.

Okay, I'm getting there; don't hurt the dog.

I was provided with a perspective and a new sense of clarity about TM at the end of March of this year. I had an experience which changed the way I think about TM, because it changed the way I think about the classification of TM. And it, therefore, changed the way I think about the TMA.

Dr. Kerr and I were working on a grant and we were doing lots of writing, talking and emailing. During Pauline's spring vacation we headed for Baltimore. Dr. Kerr and I had three days to think and talk about TM and the TMA. Dr. Kerr and I communicate often. Ordinarily, we have a long list of items to cover and it is a stream of conscious communication. We summarize our to-do lists before we hang up the phones, but I always feel as though I have spent an hour spinning inside a tornado afterward. Having three uninterrupted days to talk was really wonderful, and the benefits for both of us were significant. There are likely no two people who do more thinking about Transverse Myelitis, who do not have Transverse Myelitis, than Dr. Kerr and I. We also had some time to talk and visit with Chitra and with Dr. Adam Kaplin. It was a remarkable weekend. I believe that we both came away from the discussion with a better understanding of our mission and the nature of relationships between the neuroimmunologic disorders.

The practice of medicine has a classification system. The classification systems in medicine operate in much the same ways as the other classifications that exist in our language and culture and, for that matter, all languages and cultures. The categories serve as a way to classify what is meaningful from the full range of possible experience. And there are direct and explicit purposes and meanings associated with this classification system and there are meanings which are less explicit or obvious.

Now, what is the purpose of the medical classification system? If you asked the medical community why it is that they classify diseases or disorders, they are going to tell you that they have to define the disease because this definition determines how the person is going to be treated. The specific category determines the specific treatment. The definition also allows the medical community to determine prognosis; and we all want to know what's going to happen. These are the explicit purposes of these definitions.

This classification system operates in the same manner as my Zadie's technology classification and Linne's classification of plants and animals. Medicine classifies conditions, disorders, diseases based on a set of characteristics that are unique to that defined category. Each condition is defined as a unique category based on the presence and absence of various characteristics. While there are similarities between certain classes of diseases or disorders, in order to be placed or defined in a specific category, the condition must possess a unique set of characteristics.

At the present state of medical knowledge, there is what I would refer to as a class of neuroimmunologic disorders of the central nervous system. The different diseases or disorders which make up this class of conditions each results from a demyelinating attack at various locations in the central nervous system.

One of the conditions or disorders is Transverse Myelitis. TM is demyelination in the spinal cord only; there is no brain or optic nerve involvement. It is a monophasic condition; the demyelinating attack only occurs once. Most cases of TM are monophasic.

A second condition is Recurrent TM. Recurrent TM is not MS. Recurrent TM involves different and distinct episodes of inflammatory attack in the spinal cord. There is no brain or optic nerve involvement in any of the demyelinating episodes.

MS is a demyelinating attack that can occur in the spinal cord and/or in the optic nerve and does involve demyelination in the brain. The lesions or demyelination that occur in the brain are ordinarily identified in a specific pattern; the lesions tend to be aligned perpendicular to the ventricle (although lesions may be present anywhere in the white matter). MS involves more than one episode and the multiple episodes occur in different locations in the central nervous system.

Devics is another category of these neuroimmunologic conditions. Devics is recurrent spinal cord and optic nerve demyelination. Put another way, Devics is recurrent TM and recurrent Optic Neuritis. It is not TM because there is optic nerve involvement and it is not MS because there is no brain involvement.

ADEM or acute disseminating encephalomyelitis involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack. It is, like most TM cases, monophasic. It can be characterized by headache or seizures and may involve vision loss. The spinal cord involvement is the same as Transverse Myelitis, as are the associated symptoms.

Finally, Recurrent Optic Neuritis is a category of these neuroimmunologic conditions, which involves multiple episodes of demyelinating attacks of the optic nerve. There is no brain or spinal cord involvement.

I have just described different categories of neuroimmunologic conditions each of which is defined by a unique set of characteristics. While they are all categories of demyelinating attacks of the central nervous system, each can be distinguished and defined based upon the location of the attack and whether the attacks are a monophasic or recurring event.

In some sense, TM may be conceived of as a subset of the other demyelinating conditions, with the exception of recurrent optic neuritis. All of the symptoms of TM can be found in these other conditions. Spinal cord demyelination does or can take place in TM, Recurrent TM, Devics, ADEM and MS. Spasticity, parasthesias, bowel, bladder and sexual dysfunction, fatigue, muscle weakness or paralysis, or depression from an inflammatory attack in the spinal cord from any of these conditions is going to be pretty much the same, and the treatments for each of these symptoms, regardless of the condition, are going to be the same. From the perspective of symptoms, these conditions share many similar and important characteristics.

As I noted above, it is the disease process which distinguishes the categories; where in the central nervous system the inflammatory attack occurs and whether the attacks are monophasic or multiple. It is suspected that there are some very complicated relationships between these conditions. Besides the fact that they are all demyelinating attacks in the central nervous system, the following are some interesting clues or insights about these relationships.

A person can have a demyelinating attack that occurs only in their spinal cord. There is no brain or optic nerve involvement, so they get a diagnosis of TM. Some time later, they have another episode of demyelination which involves the spinal cord and the brain and may involve optic neuritis. This person will be diagnosed with MS. Their first diagnosis was correct; they had TM. Now they have MS and will be treated as an MS patient.

A person can have an inflammatory attack in the spinal cord and receive a TM diagnosis. A second attack occurs only in the spinal cord again, and the person will receive a Recurrent TM diagnosis. A third demylinating attack can occur in the spinal cord and this time also involve optic neuritis. This person will now be diagnosed as having Devics and will be treated as a Devics patient. The first diagnosis of TM was correct. The second diagnosis of Recurrent TM was correct.

I have come to appreciate and believe that the answers about one of these conditions is going to provide answers to all of these conditions; even if they are different conditions. I also believe that so long as there are distinct characteristics that define each of these categories, they have to be treated as unique and distinct conditions and should be treated that way and studied in that manner. If a person has TM and has not had a second episode in years or if they have ADEM, they are going to be treated differently than a person who has Recurrent TM, MS or Devics. Identifying the differences between these conditions is critical from a medical treatment perspective.

As there is no clear set of causes in all cases for all of these conditions, there is no understanding as to why one person is effected in one place in the central nervous system and not a different place; or why one person has one episode and another person has multiple episodes of demyelination. Why is it that I could have the same flu virus as Pauline and her's could trigger an auto-immune attack of the myelin in her spinal cord, and mine just makes me miserable? How is it possible that I could complain more about my flu symptoms than Pauline complains about her paralysis, bowel and bladder dysfunction and nerve pain? Is there a difference in the immune systems between people who have monophasic versus multiple episodes of demyelinating attacks? If there are differences, could they be genetically based. Could those who experience multiple episodes of these neuroimmunologic disorders have compromised immune systems which are prone to be triggered to attack their own myelin in the spinal cord, optic nerve or brain? Is there some genetic predisposition which might explain weaknesses in the blood brain barrier in different places in the central nervous system which could explain the differences between TM, ADEM, Devics, and Optic Neuritis? These are all questions I would try to answer if I had taken less kinship and linguistics courses and more organic chemistry and microbiology.

When Karl Linne' defined the different categories of animals, he did not know anything about genetics. If he had, he would have had a completely different and really wonderful set of characteristics that he could have used to define groups of animals and to distinguish them from other groups of animals. But he was limited by the then current understandings of biology. He could only use characteristics that he could observe and that he knew. It is not different today. Medical scientists can only use characteristics that they can identify and that they know. If there is no diagnostic test for it, it is not available for this definition. Today, physicians are using MRIs, CAT scans, lumbar punctures and various blood tests to observe the presence or absence of various characteristics. If they observe one set of unique characteristics, you are told you have one condition; if they see something else, you are going to get the diagnosis of a different condition.

One day, they are going to find new characteristics, and then they will better understand how to define these categories, and diagnose these conditions. I have no doubt in my mind but that the paradigm we are thinking about today will change. And I believe this even more strongly about the neuroimmunologic conditions, because we are thinking about them with such large gaps in our understanding about these conditions.

It is now time for me to shift gears from the explicit medical to the latent purposes of these definitions. When Pauline was first given the diagnosis of Transverse Myelitis, we were told by one of the physicians that TM was really not a disease; it was a description of symptoms. I have thought about that comment a great deal over the years, because as I have described, I think of language and categories in these anthropological terms. I know, I should probably give my brain a rest. Early in my evolution, my reaction to his comment was, "Wow, given all of the stuff this woman has been through, couldn't you at least dignify her experience by giving her a disease? What's with the disorder and condition business?" Early in this process, I felt a reluctance by the medical community to firm up the definition of Pauline's condition. Hey, me and Karl like order.

Okay, maybe I'm being sensitive; I can be overly sensitive. On another occasion, I was listening to physicians talk about the definition of TM. The gist of a remark I heard was, "well, I'm not sure about the specific concept; I know that there is a Transverse Myelitis Association." My translation of this statement was that they were not at all certain that there was a category of unique characteristics that could be defined as TM, but there was an association which was somehow formalizing the definition from outside of the customary practices and rules of medicine.

I thought, "that is really amazing; maybe Deanne Gilmur and Sandy Siegel are responsible for the existence of Transverse Myelitis." That couldn't be; Deanne and I aren't that cleaver or devious. And besides, if I was going to get really creative, I wouldn't invent a disease, I would create a religion. I started thinking; there are physicians all over the world who are looking at a collection of characteristics and they are independently concluding that the person they are evaluating has something that they are going to define as TM. If this isn't something, then all of these different physicians need to stop giving people this diagnosis. So, I concluded, I needn't be paranoid about a conspiracy to concoct TM; Deanne and I didn't do it.

Finally, I was speaking with a physician who had applied for an education grant involving TM. One of the reviewers suggested that funding a TM grant might not be an effective approach because it might result in a balkanization of the neuroimmunologic and spinal cord injury areas. It was at this point that I concluded, that while I am hypersensitive and should probably work on that flaw in my next life, there was something really funky going on with this definition of TM.

If you think only in terms of physiology and biology when trying to make sense of the medical classification system, you are not getting the complete understanding of the system. Language and culture are quite complicated. We have a tendency in our culture to see science as having a set of laws or rules which operate in a very systematic way, and we tend to minimize the impact of social rules on the natural world. But, of course, science does not exist in a vacuum; it exists within a complex culture that strongly influences how science is practiced and also how the laws and rules of science operate.

We can see the interplay of the medical and scientific world and sociocultural world at work all the time. Scientific discoveries would progress at a faster pace if scientists would regularly share the results of their work and would collaborate on a more intimate basis. If all scientists had access to unlimited information, there would be more and more rapid discoveries made across medical disciplines. There are, however, substantial financial rewards and prestige rewards associated with these discoveries, and as a result, most research is done without open and frequent communications between scientists, and the opportunity to build on information during the course of research is sometimes lost. Results are published when the research is completed, and the research results are often proprietary and are patented if there is a financial gain associated with it. An argument could be made that without the underlying competition which is driven by financial rewards and prestige rewards, that research would not progress at all. I am merely pointing out that science and medicine exist in a culture which strongly influences how it is practiced. I am not evaluating the merits of the system or proposing we all move onto the medical research kibbutz.

How we classify and define disease, disorders, conditions has the explicit medical purpose of determining treatment and prognosis. Another aspect of these definitions and classifications has to do with the more latent purposes of these medical classifications. How we classify and define these conditions is also influenced by the broader social and cultural rules in American society. And these less obvious purposes of medical definitions concern funding for research, resources for medical centers, universities and private companies, career opportunities and prestige assignments for scientists, physicians and faculties, and the individual financial rewards which motivate so much of our behavior. A part of the definitional process concerns a very objective application of rules; another part of this process concerns a very subjective and human application of a totally different set of rules. The medical definitions have a very real set of perhaps unintended social, emotional, psychological, and financial consequences. I do not believe that there is anything unethical or devious or unprofessional about the "other" set of rules operating in this environment. After all it is the same society and culture that establishes both sets of rules and society very certainly defines the goals that are held up as rewards from the application of both sets of rules.

I do believe that over the years, the comments I have heard do reflect a reluctance to define TM as a specific category of disease or disorder. I believe that the reluctance was, in part, accounted for by the lack of understanding about what TM is and how it relates to the other neuroimmunologic conditions. I also believe that this reluctance is partially motivated by the competition for the scarce resources that are available for research and all of the other costs associated with the existence of a particular disorder or disease.

The entire medical community is competing for a finite amount of resources. These resources make research, treatment, education, and quality of life programs possible. These resources are also required for the hiring of faculty, scientists or physicians, the building of facilities, the hiring of staff and the development of the enormous and complex infrastructures that support these people and organizations. The expenses are tremendous.

Who needs another disease with a separate infrastructure and all of the costs associated with it? In this context, I fully appreciate the "balkanized concept." From the perspective of the traumatic spinal cord injury population or the MS population, we might appear as some pesky group trying to siphon off resources from the common good. And we are. Because the common good provides for better treatments and the possibility of restorative therapies for all people in this large community. The common good will not, however, provide our community with the answers to: what is TM, what causes it; what is recurrent TM, what causes it; what is Devics, what causes it; what is ADEM, and what causes it. And I don't think we get to be a disease until we get the answers to those questions.

There was a large and well organized traumatic spinal cord injury community with a very large infrastructure long before there was a TMA, and there was no one who decided to specialize in the treatment of TM or focus on TM research. The same can be said about the MS community. I do not have great faith that the answers about TM are going to emanate from these existing disease communities.

There is no group or individual that is not deserving of a share of these resources. Unfortunately, before there was a TMA or a JHTMC or physicians interested in these conditions, the likelihood that significant resources would be made available to our neighborhood of the neuroimmunologic community just because we were a population in need was not good. So not good, in fact, that even with our organizations, we still aren't getting any of it. But the potential for our ability to compete for resources is growing.

The physician who made the statement about the relationship between the TMA and a definition of TM did, in fact, make a rather insightful comment about the social order and the medical community. The TMA did not invent TM; the medical community discovered TM and this article attempts to make explicit on what basis the discovery was made. The TMA merely gave those with TM a voice and shined a spotlight on their experiences. We helped those with TM find each other and to start to organize an effort to compete for the resources that are available. And we have begun to arm people with information to make them more effective advocates for themselves and their loved ones.

But if the TMA has helped to solidify TM, in my mind, that is a good thing - cause my wife has it; and a bunch of doctors have told her she has it. But what the TMA has accomplished in this regard does not compare with what the Johns Hopkins Transverse Myelitis Center has done. The TMA may have solidified TM into jello; having a premier medical center in the United States establish a center of excellence in TM has transformed it into concrete.

The TMA does not advocate for people with MS. The reasons for this have nothing to do with the medical definitions of the neuroimmunologic disorders. In fact, when it comes to research, we should be advocating for collaborative work. What is learned about TM will benefit the MS community, and the reverse is also true. Unfortunately, for all of the other-than-science reasons, at the present time, there are few benefits to the TM, Devics and ADEM communities as compared to the disadvantages of a union of efforts and organizations.

Before I pull my pants down totally in public, I would like to make myself perfectly clear about what I am contending here. Our medical advisory board is well represented by physicians who specialize in the treatment of people with MS and research on MS. They have been incredibly generous in donating their time, expertise and resources in providing so many services and assistance to the TMA and the TM community. I have been on many an MS walk-a-thon and have all of the t-shirts to prove it. We have members in our Association who have MS; I love them the same as I love our members with TM, ADEM and Devics. I regularly suggest that our members, regardless of their diagnosis, be treated by a neurologist who specializes in the treatment of MS. I have the utmost respect and appreciation for all of the good that has been done by the MS community! Some of my best friends and favorite relatives have MS.

I have been in contact with various people who work for the MS organizations. Most of them are not aware of TM. I have no idea what their level of awareness or knowledge is of Devics or ADEM, since I can't say I was all that aware of these disorders myself until our members began forcing me to learn about their conditions. I would assume their understanding of all of these conditions are about the same. They are focused on MS, as they should be.

The MS community is not very highly sensitized to the existence of these other conditions or their relationship to the class of neuroimmunologic disorders to which MS also belongs. I have heard from more than a few people with TM that an MS doctor did not want to see them or feel comfortable seeing them because their practice was limited to MS patients and their expertise was MS. If physicians are confused about the relationships between these conditions, I don't expect the lay people who run these organizations to be any more highly evolved. In fairness to the organizations and the physicians who compose this community, if I were in their position, I would likely be doing the same thing. They don't have to pay any attention to us; and they certainly have enough of their own issues to focus on without adding more. And, as I noted, our members have been embraced in far more instances than we have been denied.

A person is one hundred times more likely to get MS than they are to get TM. I am concerned that if we joined forces with the MS community, the answers about TM, ADEM, Devics, and the variants of these conditions would be further buried than they are now. As I have said many times before, we benefit from MS research and from spinal injury research. The central issues for our community, however are not going to be addressed in primarily MS research; we need a focus on our issues by our researchers. And we need to do a better job of competing for our share of these scarce and valuable resources.

I am developing a better awareness of the other-than-scientific implications of these definitions. How we are organized and defined is about more than a disease classification and it has implications for how we are perceived by the medical community, by the government and private institutions that fund research, education and quality of life programs, and the general public. Maybe all of this has been totally obvious to all of you; it wasn't for me. But then let's review the qualifications I bring to this job. I love Pauline very much. When she got TM, it totally broke my heart and I felt helpless to do anything to help her. I ache to see people who are frightened and hurting and I want to do something to make them less frightened and to make their hurts go away. I am willing to work hours and hours for free. And I don't have enough good sense to keep my mouth shut. Let's see, never ran a company, never held a bake sale, and I insisted that my lab partner pith the frog (while I excused myself to go vomit, cry and sit shiva). Do we get the picture?

I left Baltimore thinking, wow, my head hurts and I could sure use an easier hobby. I also felt really blessed to be involved with such amazing people. The physicians on our medical advisory board are such a brilliant and a wonderful group of people.

We have always had members with recurrent TM, Devics, recurrent optic neuritis and ADEM. I am sorry that you have been buried in our ignorance. The TMA is committed to doing more for you. I will work on having more information about these conditions published in our newsletters. We will address more of your unique issues at our symposia. We will work hard to encourage research across the spectrum of neuroimmunologic conditions so that each condition is better understood and so that the relationships between them are better understood. And we will work hard to be sure that there are physicians interested and focused on your treatment, care, and quality of life.

And to conclude with total mayhem in this column, if you have Devics or Recurrent TM or Recurrent Optic Neuritis, I would strongly encourage you to join the MS organizations, to get on their mailing list, to read their publications, to pay close attention to MS research results and to participate in their education opportunities. Due to the element of recurrence in your conditions, you need to be fully educated about the full range of treatment options and any new treatments or medications that are available or are in clinical trials for multiple sclerosis. You should probably be discussing these issues with your physicians regularly, and being aware of options is part of what makes you a good advocate for your care. These issues will be thoroughly addressed by the MS organizations. And always remain a member of the TMA, because we are committed to making a difference for you and we care about you!

We are going to remain the TMA; it may become a vestigial name reflecting the state of medical understanding in the early 21st century. For now, I'm not paid enough to be motivated to think of a new name and then change it on every publication we currently produce, not to mention the work Jim would have to do on the web site. So, read TM, think neuroimmunologic.

The Transverse Myelitis Association advocates for people who have transverse myelitis, recurrent transverse myelitis, recurrent transverse myelitis and recurrent optic neuritis or Devics Disease; recurrent optic neuritis; and acute disseminating encephalomyelitis or ADEM - and their loved ones and caregivers.

Please take good care of yourselves and each other.