In each issue of the newsletter, we will bring you a column that presents the experiences of our members. Their stories are presented In Their Own Words by way of letters they have sent us. We are most appreciative of their willingness to share their very personal stories. It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves. It is our hope that the stories will help us all realize that we are not alone. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.

When I first spoke with Ms. Deanne Gilmur she asked me to write my story. I wanted to, but never knew how to say it. I am glad I waited, because no one has been able to relate to my circumstances until now. Everyone in the forum who has shared a piece of their past could not have spoken any better or clearer. Thank you for giving us a forum to release the ghosts from our past.

It was Thanksgiving 1971 and we had a blizzard. I was 13 years old with about a week before my 14th birthday. One of my brothers worked for a snowplowing business and I had a chance to make money. I talked them into letting me work with them for the day. It was a very wet and heavy snow, and we worked for the whole day.

I was getting tired as the day progressed. About an hour or so before we were to quit for the day, I had a sharp pain that started in my upper back and it traveled all the way around to my chest. I could not straighten up from a hunched-over position. I was being paid so I continued to shovel snow with the pain. It continued the rest of the evening. I took a hot bath that seemed to help. I woke up the next morning back to normal.

On December 12, 1971 I was walking home from the store with friends when the sharp pain came back. It seemed more severe then the first time. Two of my friends had to carry me home because I had a hard time walking with the pain.

I do not remember my parent's reaction when I arrived home, but I do remember that I went to bed with the pain having a hard time sleeping. I finally went to sleep waking up later on with the pain. Again, it took awhile to get back to sleep. My father woke me up to do my paper route at 5:30 A.M. When I went to get out of bed, I fell out, not being able to walk. I crawled down the stairs trying my hardest to get up. I slept most of the day.

My parents finally took me to the local hospital over 24 hours after the pain began, around 7:00 P.M. I no longer had any control over my bladder or bowel. It would just happen without me feeling a thing.

After being in the hospital for over five hours, the emergency room doctor told my parents there was nothing wrong with me. As someone else mentioned in the forum, they believed all of the symptoms were "all in the patient's head." Let me tell you how qualified this doctor was. He stuck my legs with pins and I did not have any feelings. An hour later, he comes back in to see me and asks me why my legs were bleeding. I had to tell him it is where he stuck me with the pin.

My parents carried me into the hospital and then carried me out without a diagnosis. No medication, no therapy, no wheel chair. Just go home. My parents were not fighters. They did not ask where to go from there; they just took me home.

I had to crawl around the house to get from one room to the other. After about a month of doing that my mother finally called my pediatrician. He recommended a neurologist. I went to him a month later. By this time I had regained the ability to stand and walk again. I walked on my toes, not on my whole foot. I did not have feeling from my lower chest/upper back to my feet.

I taught myself how to walk again. I took control of the spasms of my legs and used them to my advantage. I would stand holding onto something and as my legs began to spasm, I would move in any way the spasm took me. At the beginning, it was mostly falling to the ground, but eventually it was forward and sometimes backward. I would walk sideways like crabs, sometimes straight, sometimes slow, but mostly fast before falling many times.

Friends and family could not understand and most of the time were cruel with their comments. As one person stated in the forum, we had to try to overcome adversity. To me that was an understatement. I felt alone and had no one who understood or who wanted to help.

The neurologist finally classified me as having Transverse Myelitis. He put me into the hospital for tests. I had also developed headaches. He stated that headaches were not part of the symptoms of Myelitis, which does not seem to be the case since others in the forum have stated that they have experienced them also. I never had the opportunity to get any form of therapy; instead I was given Codeine for my back and Darvon for my headaches which never really worked. Since Tylenol has been on the market, I have consumed many.

He did several spinal taps, EKG, EEG, and put dye into my arm to check out my bladder, bowel, etc. Never heard of a MRI or CatScan back then. I was 14 at the time, so I did not understand what was going on and no one was willing to explain. My parents did not ask a lot of questions, so they did not know either. I was in the hospital for three days the first time in February 1972 and five days the second time in September 1972.

Unfortunately, my neurologist trashed my file so I no longer have the records. He seemed to be a good neurologist, but if it was out of the realm of the norm, like TM, he did not seem to know. It might have been the time frame since it was the early 1970's.

I was out of school with tutors for the end of my freshman year and the beginning of my sophomore year. I went back to school against the will of my neurologist. He wanted me to stay home (he told me if I went back to school, he would no longer be my doctor). I wish I had stayed home. I could not adjust to the fast pace of high school. I felt like I did not belong. At times, I could not make it to the bathroom in time. I was so embarrassed. I missed out on many things growing up, because I could not be far from a bathroom. I never knew how quickly it would happen. I would agree to go places and then cancel at the last minute with some bad excuse. As I have gotten older, control has come back. I now might have an accident or two a year.

It took about 18 months or so to get the feeling back in my legs. I still do not have the full feeling in my lower back, but my upper back is oversensitive. In 1982, I had an operation, which allowed me to have my daughter in 1994. In 1996, I had a heart attack because of extremely low potassium, which caused my artery to spasm, and then shut down. I now take a daily prescription of potassium.

As for today, like the others, I still have a list of symptoms, which I wish would go away. But I thank G-d for my health and allowing me to have a child. Lately, with the fatigue, I have been experiencing short-term memory loss. I was told it would never happen to me again, but it now scares me to hear of others getting it more than once and others experiencing Multiple Sclerosis after having TM. I wish to go to a Physiatrist but do not see any listed in my area. I would like to find a great neurologist and have a MRI and CatScan done just to see what is going on.

As for me, I am a natural gas trader in the energy business and have a beautiful wife and daughter who are very understanding. We are in the process of adopting a second child.

Thanks for letting me share my experience with you.

It has taken me quite a few weeks, and lots of soul searching, before I have reached the point where I feel comfortable about submitting my story. This is because I was only mildly affected by TM. Compared to the majority of fellow sufferers, I feel as though I am some kind of fraud, especially as they are generally much worse off than me. However, after much encouragement, I have decided to write it anyway, in the hope that there may be someone else with a similar story or that it may provide comfort to someone.

I was a 25 year old, healthy young man living in London with a career in the money markets, when I went on holiday with a group of friends to Cyprus in September 1995. After a heavy week of late nights and partying, I started to feel unwell on the last day of our holiday. It wasn't until I arrived back in the UK that I developed a fever and an excruciating headache. I was taken to the hospital and given medication to combat the dehydration. I was then released some 12 hours later after being told that I'd just had a nasty viral infection. My instructions were to take it easy and rest. After a couple of weeks, I still felt very weak and noticed that I kept losing my balance and having dizzy spells. I requested a second opinion and after an initial consultation was immediately hospitalized for further investigations. During this period I became steadily weaker, my balance deteriorated and when the consultant stuck pins in me, I realized that I had a loss of sensation from my nipples downwards.

After numerous tests centered on my liver and blood count that were slightly abnormal, I eventually saw a neurologist. Then followed three further weeks of tests including three lumbar punctures, two MRI scans (all of which proved inconclusive), evoked potential and nerve conduction tests. Eventually, most well known neurological diseases were ruled out, including MS. Unfortunately, over this period my symptoms became worse to the extent that I was so weak that I could hardly get out of bed unaided. My balance was so poor that I had difficulty standing up. The loss of sensation from my nipples down had become worse.

It was at this point that my neurologist told me that he thought that I had a mild case of TM, a condition that I had never heard of. I was eventually transferred to yet another specialist neurological hospital. Thankfully, my condition bottomed out after I was given what I believe to be some sort of steroid medication. However, at no point can I remember feeling a sharp pain in my back or a tight feeling around my waist, nor did I lose control of my bowel movements, although I had very bad constipation. I stayed in the hospital for another month, where I received intensive physiotherapy focusing on building up my strength and learning how to walk properly again.

When I left the hospital, my symptoms included weakness in my limbs, I became easily fatigued, I had poor balance, I had some loss of sensitivity from my nipples downwards, and my left side was weaker than my right, together with some hypersensitivity. At this point my neurologist told me that my symptoms would improve with time and physiotherapy, and that there was a good chance that I would make a full recovery. Unfortunately, after some three years of rehabilitation, during which time I managed to relapse quite badly on three occasions, usually through over exertion, I found myself being admitted to the hospital, once again, for a course of intensive physiotherapy. At the same time, my neurologist carried out further tests to ascertain the extent of damage still found within my nervous system. He concluded that as the healing process had not worked by now then it was unlikely that I would make any further significant progress. He surmised that the best that I could hope for in the long-term was to regain 60% of my previous function. My diagnosis has now changed to "neurological condition affecting mobility secondary to TM." I have been given this diagnosis because even though I have much the same symptoms as I had three years ago, physical fatigue and weakness in my limbs remain my main problems. This usually occurs after any sort of sustained physical or mental activity. I have become stronger to some extent, and can walk some 200 yards. Just before I become overtired, my balance starts to give me problems.

I am receiving physiotherapy twice a week and it helps. But I am unable to drive because my reactions slow considerably when I get tired. I am unable to work because I am just not physically strong enough to travel and to complete even a half-day of work.

Therefore, you can see how my story and my symptoms differ from most of the others found on this website. That's not to say that I can't relate to most of your circumstances, and I have still found reading your messages truly inspirational. Until I discovered the TMA, I really was at a loss as how to find people with either similar experiences or people who had even heard of TM within the UK. This condition is so rare. I now feel as though I have found such people.

I would like to know if anyone else in the TMA can relate to any of my symptoms, especially the fatigue and limb weakness, which really trouble me, or if anyone has contracted TM through similar circumstances. The other thing I'd like to ask, is how everyone deals with coming to terms with something like this. I know that I am not as badly affected as some of you out there. But ever since the day three months ago that I was told that I wouldn't make a full recovery and the best I could hope for is just over half of my previous "self," I'm finding it very difficult to come to terms with it. I'm very lucky in that I have a wonderful set of supportive friends. But I still don't think that even they realize what a devastating effect something like this can have on your life. I think the thing that I have most difficulty with is coming to terms with the fact that it is unlikely that I'm going to achieve the goals and aspirations that I had set for myself in the future, especially in terms of things like work and social activities. I hear people saying that you have to go through a grieving process to mourn the loss of the old "you," but no one seems to know how long something like this takes. I guess everyone is different.

Anyway, I'm really glad to have found a group of people who I can finally relate to; at least in part, if not completely. Although my tone throughout this story seems to indicate that I'm resigned to my neurologist's prognosis for the future, believe me, that in keeping with nearly all the messages I read, there's no way that I'm going to just accept it without a fight. God bless you all and remember, it's just too easy to give in.