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 found your web site I cried. There really was somebody someplace that knew something about the disease I had endured. When I contracted transverse myelitis in 1987 I couldn't find any information in libraries or even many doctors that knew anything about it. I was very fortunate; my case was not near as severe as many who contract TM. But nonetheless I suffered plenty. It's been 13 years and many of the smaller details are not fresh in my mind, but I will provide a brief synopsis.

In December 1986 we went to Florida for the Christmas holidays. I became feverish and starting aching and believed I was getting the flu. The next morning I seemed to be OK. It didn't make much sense but I was relieved since we were on vacation. That winter was supposed to be a bad flu season so for the first time in my life I got a flu shot around the 10th of January. Within a couple of days, I was running a low-grade temperature (99+) and felt feverish. I called my family physician who said I was probably having a reaction to the flu shot. After about 10 days, he decided to run some blood tests for anemia, etc. All tests turned out negative. I kept getting weaker and in more pain. I was taking Tylenol and trying to get a lot of sleep.

In February my family physician sent me to a neurologist. He ran an EMG along with a spinal tap (from which I developed horrendous spinal headaches; he sent me home immediately following the tap sitting up in a car). His diagnosis was that he definitely found diminished muscle strength but had no idea what was causing this. My strength kept deteriorating and the pain was getting steadily worse. I continued to work during this period of time but it was on sheer guts that I made it.

There would be days that I would drive home and be in such pain that I would be almost bent over the steering wheel. Unfortunately, I had an employer who was not the least bit understanding. Because of the fact that the doctors couldn't determine the source of my disease or put a name to it, they constantly pressured me to be at work and in many instances insisted on 5-10 hours of overtime each week. My husband was a farmer and I was carrying all of our insurance. Needless to say, it was mandatory that we keep insurance during this time period. The middle of March, my family doctor sent me back to the neurologist for further tests to determine if there was any discernible change. During my follow-up conversation with the neurologist he stated, "You definitely do have some muscle damage and weakness but I can find no reason. Are you sure that this isn't all in your head?" I was devastated and cried all the way home. My family doctor, who at this time had tried everything he could, decided to send me to the Mayo Clinic. He was following up on arrangements when he called and said he wanted to try one last physician in Cincinnati.

He sent me to Dr. Beverly Carpenter, an arthritis and immune disease specialist (who unfortunately died of cancer in February of this year). In describing my symptoms to her, extreme pain, sleeplessness, fatigue, loss of bladder control, difficulty in moving, she said she thought she might know what was wrong but wanted to run tests. After numerous blood tests (30+), two MRI's were scheduled. MRI's are quite different today. In 1987 each segment of a test would last from 6 to 20 minutes. By the middle of April, it was determined that I had transverse myelitis. For the next two months, Dr. Carpenter treated me with Prednisone.
Unfortunately, I had terrible side effects from the Prednisone for many years. I constantly had a reoccurrence of the symptoms which of course put me in a panic every time it happened. All together I had MRI's on six different occasions to be certain the myelitis was not returning. I feel that I was very fortunate, especially after reading some of the cases in the newsletter. According to the doctors, a lot of what got me through this was my bullheadedness. I refused to give in; but sometimes it was difficult, almost impossible. There were a couple of times I really wondered if the pain and enduring the treatment I was receiving at work were worth it. Once I even thought for a minute about just running the car into a concrete abutment. But then I remembered I had a husband that had supported and loved me every single minute even though he didn't understand what was going on and was scared. I also had two daughters that had already endured the pain of losing their Dad to a heart attack at the age of 41 and they surely couldn't endure much more.

I left my old employer and took a "dream job" with a bank. Everything I had endured through the initial onset of TM, and particularly as it related to my employer, was in the past. I was still having problems, some of which I'm not sure were related to the effects of the myelitis or simply "old age." The bank allowed me to work four days a week which definitely helped. Muscle strength was definitely deteriorated. I continued to take Prozac and Moduretic to counteract the side effects of the megadoses of Prednisone. A recent bone density test indicated that I have some deterioration which may or may not be related to the myelitis. The end of April 1999, I began to deteriorate again. At first I thought it was because I was just pushing too hard (as usual) and with enough additional rest everything would be fine. It wasn't. Again the battery of tests began. This time even more extensive than before. I had mononucleosis. I couldn't believe it; I was 51 years old. Rest, rest and more rest would be the solution. But I didn't improve. More tests. I was diagnosed with fibromyalgia and chronic myofascial pain syndrome. Just my luck. To get another disease that I knew nothing about. So again, I started researching and found a specialist here in Cincinnati. With the most recent diagnosis, our whole life has changed. I can no longer work. I do very limited driving. My husband has "retired" from farming to help me. We have moved into another home that is designed to make everything easier for me. I have lost a great deal of my independence, doing yard work, playing with grandchildren, grocery shopping, etc. This illness has been even tougher psychologically because "I beat" transverse myelitis, but it was obvious I wasn't going to defeat this. Giving up independence and being dependent on others has been the toughest part. I'm living in constant pain, most bearable but some not. Whenever I get discouraged, I remember how much worse I could be. I'm convinced my belief in God and the fact that everything happens for a reason helps me get through. Plus, I have terrific support from my husband, my daughters and especially the overwhelming love and smiles from my grandchildren. My life certainly did not turn out exactly the way I envisioned, but it could certainly have been worse. Bless you for getting the information out. The worst part of transverse myelitis was going through it at a time when no one had any information and, at times, I really did wonder if it was "in my head." Now, I wonder if anyone else has contracted fibromyalgia and/or chronic myofascial pain syndrome after transverse myelitis. I'm researching, but so far to no avail.

Joyce Heritage
Wilmington Delaware
One-Year Ago on Father's Day

I appear to be one of the "new kids on the block." I had an acute attack of Transverse Myelitis just last Father's Day, June 22, 1999. Since my symptoms were so instantaneous, my recovery progressive, and medical team suggestions so helpful, I want to share my happenings to help benefit others. A thank you, also, goes out to all those who contribute to making the TM Newsletter a reality; it helps dealing with this rare devastating paralysis by realizing we are not alone.

Last year I was enjoying Father's Day dinner with my husband at my daughter's house at 6:00 p.m. The day until then was quite enjoyable - Mass, movie, and dinner out. I experienced leg cramps in both my calves, which relieved after standing and stretching. After finishing dinner, I played with my grandson. My husband and I started the drive home around 8:00 p.m. At home as I started to remove my stockings, I realized I couldn't feel my toes or feet. At first I thought the earlier leg cramps must have caused this unusual sensation. After changing and going to bed, I remembered I forgot to use the toilet. I got out of bed and fell against the bed and end table - 10:00 p.m. By this time the calf cramps were back and I was calling for my husband to help walk me down the hall in hopes of getting some relief. After walking with his support, I tried using the toilet. Upon standing up, I walked like I had frog feet, which were flopping in. After lying back down in bed, I was hit with unbearable leg cramps, again. We knew whatever was happening was beyond our ability. The ambulance was called, and I was transported to the emergency ward at the Christiana Hospital.

My initial exam ensued with three MRI's, EMG, EEG, x-rays, blood work, and IV steroids were started immediately. The suspicions while the tests were being conducted were Transverse Myelitis, Gillian Barre, or Lyme disease. The final diagnosis was TM of the T-12 spinal column. It is believed that since I had been healthy with no ill symptoms before the attack, it hit me low on the spine, and I received medication so quickly, my recovery so far appears to be remarkable. Upon arrival at the hospital, I couldn't raise my feet more than a few inches from the bed, and had little feeling in my legs, buttocks, and lost control of my bladder and bowel.

After trying to get over the shock of the diagnosis, I faced the fact my full time position in a computer-consulting firm was on hold. I focused on my goal - walking, and tried to lose sight of my obstacle - being paraplegic. I was transferred after a week to a local rehabilitation unit at the Wilmington Hospital - a four star rating in my book. It was run like a summer camp! I was up by 7:00 a.m. and dressed by 7:45 a.m., wheeled to the dining hall by 8:00 a.m., had my first session of physical therapy at 10:00 a.m., occupational therapy at 11:00 a.m., lunch at noon, and back for my second session of physical therapy at 2:00 p.m. Needless to say, thereafter, I was wiped out and slept. After spending a month in rehabilitation, I was discharged walking 27 steps with my walker and plastic molded leg braces to face the real world. I did regain the functioning of my bladder and bowel after two weeks. My gastroenterologist suggested using the non-habit forming Senekot-S to help regulate my bowels and some relief for the buttocks needle sensations while sitting is relieved by Neurontin.

I've continued land physical therapy three times a week from August 1999 through February 2000 for regaining strength with weight resistance and walking skills. I learned of Dr. Douglas Kerr's TM Medical Center at Johns Hopkins Hospital through our last Transverse Myelitis Newsletter. Dr. Kerr evaluated me in March, thought I was making good progress so far, started me on water physical therapy. He suggested I see Dr. Barbara D'Lateur at Johns Hopkins for a reevaluation of how to get the most out of my physical therapy and walking skills training. My major issues are fatigue and increased leg numbness while walking and backache. Although, I walk on familiar ground at home - when rested - with braces without a cane, I couldn't conquer the barrier of being able to leave my home without holding onto someone's arm. My toes wouldn't come up and I have fallen spraining my right ankle three times. Dr. D'Lateur scripted for me to have braces with a flexible hinge that has a 90-degree stop lock which should prevent me from tripping my toe and falling. Since I don't have much feeling from my knees down to my toes, balance is still an issue because I can't feel space for ground sensation.

I continue to struggle with the blues from time to time as I grieve losing the person I once was. However, by holding one hand with the Lord, and one with loving family members, I know the new me will make a fulfilling life for myself.

Joyce R. Heritage
219 Barberry Dr., Wood Creek
Wilmington, De 19808
jheri0801[AT SIGN]aol.com