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.

My name is Michelle Stevens, and here is my encounter with TM.. In February of 1995 I was 34 years old. I had just moved to Northern Virginia to try to start a fresh beginning for myself after a non-progressing 6-year relationship. And I had had about enough of the traffic and the people of Southern California. I had been doing well with my new job and I was spending almost all my free time working out. I was a fanatic about my workouts. I worked out at the gym every other day for at least three hours and twice a week I went to a kickboxing class, then would run, and on the weekends would either roller-skate or bike ride. This, I believe, was the key to my recovery.

I am a Corporate Travel Agent. I work on site at particular accounts. This is a very high paced and high stress job. October 1995, on a weekend, I started getting this strange tingling in both my feet. It was sorta just irritating, but then kinda hurt. I figured I must have pinched a nerve, and also was having some lower back pain. But having thrown my back out numerous times, thought nothing really about it. After talking to a few friends about a pinched nerve, I found it odd that this was happening on both feet and now both legs, when a pinched nerve normally only affects one side. Then by Monday night my feet were completely numb. I actually continued to work out! The treadmills at the gym were set up in front of mirrors, and I was just sorta staring at my legs with each step. I was amazed that I truly could not feel them. Still that week I had a lot to do. I was to meet my girlfriend in Miami on Thursday and we were going to the Cayman Islands for the week. So, I really didn't think about my numbness till I went to bed. I would pray to G-d, "come on, just give me my feet back.." Then after a few days of this, I started to get scared. I called my normal GP from work and demanded for him to see me that day. He really didn't seem to have a clue. Did the usual, "can you feel this? How about this.? And he took lots and lots and lots of blood.and said that I had a generous thyroid? (Who knew?) But I still think of him as a great doctor and a good friend. So, I went back to work and finished my day.

The next day was the creepiest. Now I had all sorts of new numb spots around my lower body and felt that tight band feeling around my diaphragm and waist. I went to work as normal and waited for my doctor to return my frantic call. He said he still was not sure what was happening and that the next step would be to schedule a MRI, possibly some time next week. I said, "Nooooo! Not next week, but today!!!!" He was a bit shocked, but after I told him the thing had now moved up to my chest, he quickly jumped into action. He thought that this "Thing?" could inhibit my breathing. He said that he would call me right back. Well, within 20 minutes, I received a call from a neurologist, and they had made room for me immediately. So, I went there and got right in. My doctor is wonderful, a very nice and caring person, very real and personable with a sense of humor, thank G-d. He did some test with a sharp pin. He poked all over my back, neck, legs, etc. then he did some reflex tests and some strength tests. Then he did this small little exercise that really scared me. He moved his finger very slowly across my face and all I had to do was touch my nose then his finger. And then a small hand exercise touching my thumb to my pinky then ring finger, etc.. This I could hardly do at all. He had me stand up, close my eyes and keep balance on one foot at a time. I could not. He started to show lines of deep concern in his caring face. He would stare at me for a minute and not say anything. Then he said that we need to do a spinal tap and a MRI right away. I would have to go to another place to get the MRI done, but he would do the spinal tap. So, I said, well, since I am here, go for the spinal tap. This was not a great experience for any of us involved. He had such a hard time trying to get the needle in. We tried many different positions and the one that worked was most uncomfortable and it seemed to take forever. He broke three or four needles and we somehow knocked over all of the iodine on the middle of the floor, which is still stained today. Finally, he got enough fluid and sent the nurse in to get some blood, still reeling from the tap. The poor nurse missed my vein and could not seem to get it in. By this time I had had enough poking and started to fall apart and cry. But just for a little bit till the concerned doctor came back in and looked at me again with concern and said there is a lot of protein in the fluid. But still, it could be a number of things. That's when he started saying MS, Lupus.all sorts of other creepy stuff. But none of this was really sinking in. After all, I still had to get packed for my trip.

So, then he had called me a cab to take me to get the MRI. So, I went and they drew some circles and lines on my back and did the MRI. Now, it's about 6:30 PM and my sweet doctor stayed at his office until the MRI guy gave him the results. Then he said that they still did not find anything, and that I was to report to his office at 9:00 AM the next day and that I should be prepared to maybe go to the hospital. Now, I was beginning to think that I would not be going to the Cayman Islands. My actual diagnosis was not really even in my mind, but I was upset because I have always been absolutely terrified of hospitals! So, I called my best friend in California, my one true love, Leonard. And told him that I may have to go to "The Hospital." He said that if that were the case, he would drop everything and get on a plane.

The next day I got a ride to the doctor's office where he did a quick exam and said that he was going to admit me to the Alexandria Hospital and set up some more tests. This was the day I was supposed to meet my friend in Miami. So, she called my doctor during the exam to make sure he was not bluffing, and he reiterated that I was not going anywhere. So, I checked in to the hospital, then got wheeled down to the MRI for two more long scary tests. They put my head in some sort of weird basket and then did some other MRI, took lots of blood, etc.

OK, so finally my doctor comes in my room around 4:30 PM and throws himself in a heap on the chair and says, OK, you have Acute Transverse Myelitis. He seemed relieved that it was not MS or Lupus. I said, Transverse what? He seemed exhausted and tried to explain as best he could. He had knowledge of this from his earlier days at the University. He said that there is no infection and that there is swelling of the spinal sheath at the base of my neck (C2). And that he was putting me on steroids. I never really had any bladder or bowel problems, but since then my bladder feels as if it has shrunk.

My best friend, Lenny, flew out on the next red eye to be with me, and stayed for a week to help me get back on my feet. This event, for some reason, seemed to really scare him and brought him to the realization that he still really had feelings for me. And this, I must say, is the one truly good thing that came from this terror called TM. Because later that year, he came back to ask me to be his wife. So, I spent four days in the hospital on heavy steroids, then continued with the Prednisone. On the third day, I was able to feel my feet again, and was able to walk without scaring my doctor that I might fall. I went home and never had any physical therapy. After being home for around three days, more and more feeling came back. Then I woke up in the middle of the night with excruciating pain in both of my knees. But I did not want to go back to the hospital, so I waited until the doctor got in and I got a very mild pain pill. I must have hyperextended my knees while continuing to work out with numb legs. I had also done some nerve damage to my arms and had to wear some elbow pads so I wouldn't whack them. I could not take a bath for a long time and sometimes if I stood in a hot shower too long, I would lose my air and my upper body strength and hyperventilate. But it would pass. I was never able to return to my full work out and I feel much weaker now. I get fatigued easily. Since it has been almost four years, a lot of the strangeness seems to become a part of you. Now my biggest fear is heat. If I get too hot, I hyperventilate and loose my upper body mobility. It is only temporary, but is scary.

Almost one year to the day after I was diagnosed, I was getting married to my Lenny. And when we returned from our honeymoon, I got a herniated disc. I believe the TM and all the steroids had weakened my already overworked back. My lingering symptoms are bionic headaches on the right side of my head that last for three days at a time. I have over-active reflexes. I get shooting pains through my neck and back. I have that weird shock sensation through my entire body when I bend my head forward. The barometric pressure outside, for who knows why, seems to have a huge impact on the way I feel. I still get tingling in my hands and feet. My sense of balance is terrible. When I get up in the middle of the night, if I cannot see a light, I will almost always walk right into the wall or doorway. I bump into a lot of stuff and often. I have lost a lot of dexterity and coordination, but I am always thankful of how lucky I am. My body temperature seems to fluctuate very rapidly, getting very hot then very cold, but I usually run very hot. When I get really stressed out and/or sick, I do experience a lot more symptoms. And now I get winded very easily and may have damaged my breathing muscles. I also get very dizzy very easily.

I thought it might also be helpful to mention any other ailments I have had in the past just in case there is any similarity to either other patients or other autoimmune stuff. As a child of four, I got psoriasis all over. I have never been diagnosed with the herpes virus, but I do get something that looks like shingles on the back of my left thigh when I get either really sick or really stressed out. I have stomach ulcers and occasionally get ulcerative colitis, and also have had some weird virus type stuff that was never really figured out. And that's about it.

Thanks for the opportunity to tell my story and good luck to everyone.

Dear Fellow TM Sufferers,

My name is Margaret Moran, aged 56 years (almost). I have been married to Terry for 34 years and have two married sons and three granddaughters.

I awoke on the morning of Monday 21st January 1997 with pins and needles in the soles of my feet - thinking at first something was wrong with the carpets!!! The next day this tingling sensation had reached my ankles. So, I consulted my doctor. He suggested I had a trapped nerve and to return in a week, if there was no improvement. Ten days later the pins and needles had reached my waist and I was having difficulty walking. I visited an acupuncturist for treatment but on this occasion there was no satisfaction.

Matters came to a head on Monday 3rd February when I was woken with an excruciating pain around my rib area. It disappeared with the help of a hot-water bottle. This was about 2 AM. At 4 AM I was woken with a violent headache in the middle of my forehead. I thought my head was going to burst.

My husband called for an ambulance and off I went to the Lincoln County Hospital. At first, meningitis was a possibility, but after further investigations, this was discounted. I was then flown by Ambucopter to the Royal Hallamshire Hospital, Sheffield, about 50 miles away, for a MRI scan as our local hospital did not have one. I was seen by the consultant neurologist. I still attend his outpatient clinic every six months.
The first MRI scan was on the base of my skull/top of my spine. It showed I had Arnold-Chiari Malformation, which I was born with (the hole at the base of the skull where the spinal cord enters is larger than normal). A brain operation was discussed, but fortunately, as I had had no previous problems in my 55 years, more investigation was required.

Four days later, I was given a lumbar puncture and then allowed home for the weekend. I returned on the 10th February when my optic nerve was tested. By this time, Transverse Myelitis, MS and other conditions had been mentioned, but I still needed further scans to confirm a diagnosis.

On the 14th, 15th and 16th February, I was given one gram of Prednisone by drip. I was struggling to keep walking and my right leg was dragging considerably, but I was determined to keep mobile. I was also given Baclofen to ease muscle spasms, but this did not help at all. Eventually, on Thursday 20th February, both my brain and spine were scanned and Transverse Myelitis was confirmed. The infection had reached level T6.

I was seen by a Physiotherapist to make sure I could walk straight, keep my balance and walk upstairs. I left the hospital the next day!

Since then, I have gradually improved so that I can walk short distances and drive the car. The pain, pins and needles, stiffness and discomfort in my feet, legs and body up to T6 continues 24 hours a day. I was prescribed Tegretol Retard, but stopped this medication as it was not effective, only making me feel very tired, but not reducing the pain.

I have always been a keen gardener, growing both flowers and vegetables. This is one activity I have had to give up, although I can sit to "pot on" seedlings, etc. in my greenhouse.

My husband has been wonderful, looking after me, taking on all the housework and cooking, especially as he had never had to cook before! Hopefully, things will gradually improve even more, although my doctors are non-committal. I have a checkup at the hospital every six months and occasionally visit my own doctor just to have a chat.

I hope this isn't too boring for you all. We've only been using a computer since Christmas so it's all very new to us!

Keep cheerful,
Margaret Moran
28 Daniel Cresc.
Heighton Lincoln
LN4 1QT
01522 790524
jersey[AT SIGN]terencemoran.free-online.co.uk