In Their Own Words cont.

Hinda Lee Sheffer
Los Angeles, CA

While reading the newsletter, I noticed that my situation differed from almost all of the others. I would like to share with you my story.

I have had Crohn's Disease for many years. I also have several other autoimmune diseases, Rheumatoid Arthritis, Iritis and Meniere's disease. I cannot accurately pinpoint the onset of my TM, because at the time, some of the symptoms were attributed to my other problems. In late '94 and early '95 I had a very severe flare up of my arthritis. When I had trouble walking in mid '95, I thought it was the after-effects of the flare up or even the beginning of another flare up. Later in the year, I had severe pain in my spine in a previously injured area for which I had a cortisone shot. In July my Mother was in the hospital for major surgery and my legs felt very heavy, but I attributed that to the many miles of hospital corridors I was covering.

At the beginning of August, I had difficulty urinating and consulted a urologist. The results were negative and no cause was found. When I asked him what to do he said, "wait and see." In hindsight, I can see that was the time I should have had a MRI and possibly detected the TM at that time.

As my walking became progressively worse, my neurologist sent me for the first set of MRI's. They did studies of the thoracic, lumbar, and brain. I was put on a decreasing course of Decadron and then no further medication.

I feel that the onset and subsequent diagnoses was clouded by my pre-existing conditions. It was so easy to think that the problems were related to the rheumatoid arthritis. In July I fell off of my neighbor's porch, but we all thought that it was due to a crack in the step. The signs for TM were there. They were just misinterpreted.

In November of 1995 I went to see a consultant about my TM. He felt that in six months to a year I should regain 90-100% function. That did not happen.

In June 1998 I heard a lecture about electrical stimulation. My neurologist told me that a similar treatment was used in our area and proved to be ineffective. At the same time, a Resident in rheumatology asked if I'd heard of the Gamma Globulin Infusion Treatment.

On October 15, 1998 I went for a consultation at the Rancho Los Amigos Medical Center in Downey, California. I was told that the Gamma Globulin is only used in the first three months of TM. It is not approved in the United States for myelitis. There is a worldwide shortage of the medication.

The bowel and bladder dysfunctions are the most devastating aspects of this disease to me. If anyone has similar problems and has found a way to reverse the situation, I would like to hear from them.

Thank you for allowing me the opportunity to share my story and my feelings. After three years it is a big relief to know that others are in the same position that I'm in. I thought I was all alone.

Hinda Lee Sheffer

John Bryant
United Kingdom

My name is John Bryant and I am a 48-year-old man married to a wonderful girl whose name is Pat. We have a delightful 4-year-old daughter, Charlotte. Firstly, may I thank you for all the information you have sent me. It is comforting to know that one is not alone in suffering with Transverse Myelitis. I used to think that I was a "medical enigma" as no one could explain to me its cause or my prognosis. But having now established contact with the TMA, I've found that there are other people "out there" who have similar conditions and experiences as mine.

Around the end of January 1996, I started experiencing dizziness and difficulty in coming downstairs. I was having to look for every step. I found that I was walking unsteadily. My GP prescribed medication for vertigo and made a further appointment. In between time, I started losing feeling in my torso and legs. I couldn't tell when I was going to the toilet and I started experiencing partial impotency.

On February 20 I was admitted into the hospital where I underwent three lumbar punctures (spinal taps), CAT scan, three MRI's, blood tests and various evoked potential tests. My neurological consultant then put me on a five-day course of steroids (methyl prednisone) but this did not help. The only thing it did was bring on Diabetes! The spinal fluid indicated an abnormal cell and my condition was classed as Non-Compressive Myelopathy. I was sent home still walking but somewhat unsteadily and with a walking frame. The numbness had reached my navel, but two weeks later it had progressed to chest level! I was re-admitted for a second course of steroids and a week later a third course. All to no effect! I still had had no specific diagnosis and no indication of whether this condition would continue, worsen or improve! All I was given was non-committal answers, such as "we fully expect this or that to happen, to get your feeling back or to walk again." All negative, gray responses. They had ruled out spinal tumors, blood clots, spinal stroke and Multiple Sclerosis. This was the time I felt as though I was a "medical enigma."

More evoked potentials, blood tests and possibly another MRI. Vitamin B12 and Folic acid were checked. Finally, TM was mentioned and it was explained that an unknown virus had attacked my spinal cord and stripped the myelin sheath from the nerves. Nobody that I spoke to had even heard of it. It seemed to be similar to MS, only it affected me a lot quicker.

I spent six months (wasted time, in my opinion) in rehabilitation having Physiotherapy having been told that intensive physio may "kick start" my recovery. Some hope! By this time I was seeing a clinical psychologist and on Prozac to help me accept the trauma of this debilitating condition.

I was sent home to begin my new life with my condition. We had a ramp fitted, a lift installed for access upstairs, the bathroom altered so I could use the shower and toilet. I purchased a lightweight wheelchair and I've recently started driving again using hand controls. So, things are looking up. My condition has not improved any. I am now wheelchair dependant, a paraplegic, numb from the chest down (level T5). My hands are now totally numb affecting my sense of touch. This condition affects the sphincter that controls bladder and bowel movements and, obviously, needs careful management and can be embarrassing, as my daughter sometimes perceives of me as a baby. I still get depressed when I consider my life now to what it was before TM. But with a brilliant and supportive wife and strong family ties, this is helping me from dwelling too much on the negative. But it's not easy and not over by a long way, but I'll get "there."

Thank you for patiently reading this elongated report and allowing me to tell you of my experience with TM. I have found it most beneficial putting it all down on paper. God Bless those that empathize with me.

John Bryant
horizons[AT SIGN]mailgate.blackpool.net

anonimous
Toronto, Ontario
Canada

For years, I actually had no idea what I really had until I looked up Transverse Myelitis on the web. I'm probably one of the longer survivors of Transverse Myelitis and want to share my life experiences with all of you hoping that my story will help cast a light of hope on many and inspire others at the same time.

I am a 24-year-old woman who on December 27, 1986 was diagnosed as having Transverse Myelitis. I was a healthy and active 12-year-old girl at the time. On Christmas Day of 1986, I had gone to church with my family and I remember that the church was so crowded that there were not enough seats for everyone and so I remained standing throughout the one-hour mass. I remember complaining to my parents of lower back pain and sore legs throughout the mass, but did not think much of it at the time. After all, it is quite normal to complain of sore legs after standing for about an hour. When I got home on Christmas Day, I felt fine. It was not until the 27th of December that things changed. On the 27th, I woke up fine and went to the washroom. Before I entered the washroom, I got this excruciating sharp pain in my back. The pain was so strong (as if someone had just stabbed a knife through my spine) that the minute I felt it, I leaned with one hand against the wall, because I thought I was going to fall. The sharp pain lasted only seconds and I felt completely fine afterwards. I did my morning care and then went to the living room to watch some television. When I sat down on the sofa my legs began to hurt. I remember the pain in my legs was strong, but this pain was different from the sharp pain I had experienced a couple of minutes before in my spine. This pain was not sharp, but it was more like a sore type of pain. I was scared and confused.

I did not know what was happening so I got up to go tell my mother who was downstairs in the laundry room. As I walked through the house, my legs were sore and they also felt very weak and numb. I thought I was going to fall. I managed to get to the basement by holding onto the walls. When I reached the bottom of the steps, I took about three steps and then my legs completely gave out on me and I fell. My mother thought I had bumped into a table and she came to help me up, but I then realized that I could not stand up. The slippers I had on had fallen off and I now could not put them back on because, at that instant, I could only feel my legs and feet but was not able to move them. Seconds later, I began to get a tingly sensation (similar to what one feels when their foot is sleepy) that started at the tips of my toes and was rising up my legs. As this tingly sensation was rising up my legs, I was losing movement and sensation. The tingly sensation reached below my chest and there it stopped. When the ambulance came, I was still fully conscious of everything and I no longer experienced any other pain.

At the hospital, my parents were first told that I had some type of a rare virus that is more common in males. However, when I was admitted at the Hospital for Sick Children, the diagnosis changed. Here they first performed some type of X-ray on my spine (I do not remember its name) where they injected some kind of dye in my spine in order to see it. I then had a CAT Scan which was followed by a Magnetic Resonance Scan a couple of days later. Meanwhile, in the hospital, I was given steroids for about two weeks. The steroids had no affect on my situation. After undergoing various tests, (some that I do not even remember) the doctors diagnosed me with Transverse Myelitis. At the time I had no idea what Transverse Myelitis was. The truth is that I do not think the doctors really knew what it was either. None of the medical staff ever really explained the diagnosis. All I was told was that I had suffered some type of inflammation in my spine and that I was never going to walk again. The shock at the time was unimaginable. It was a devastating experience, but today I know that I survived.

I underwent more tests in the hospital. A week after my diagnosis, I underwent plasmapherisis for six days. This type of test was, of course, not fully explained to my family either. We were told that perhaps I had some white blood cells around my spine that were causing this paralysis. The plasmapherisis did not worsen or better my situation. Before I left the hospital, I had regained my sensation up to my waist. I still could not move my legs or feel them. After a month of being in the hospital, I was transferred to a rehabilitation center where I remained for about seven months. Here I began occupational and physio-therapy. I began to slowly improve. Eventually, I regained some movement and sensation up to my knees but it varies. Today, I still use a wheelchair 100% of the time.

I finished university and graduated last year with a Bachelor of Commerce. I now work full time as an investment accountant. My life is pretty much like any other person's. I see my situation not as a disability but as a challenge. Surviving Transverse Myelitis has been a learning experience. It has not only made me a better person, but I have learned to never take things for granted and to make the best of everything. I will admit that the road to recovery was not easy. However, today I know that anything is possible with a positive attitude. I can still do almost everything but in a different way. Nothing is impossible, everything is possible and life is what you make of it. Dreams can still come true after TM.

Sincerely,anonimous

MY TM STORY
Leslie Hoffmire
Bowie, MD

I was stricken by TM on December 12, 1995. I was 35 years old. Prior to this date, I had been on total bed rest for high blood pressure. I was 8 months pregnant when I was bedridden. I don't remember having flu-like symptoms, but by this time in pregnancy, tiredness and weakness seemed normal. I was only allowed out of bed to use the bathroom. The time period for bed rest was Halloween until the morning of December 11, 1995.

Monday December 11, 1995
This is how December 11, 1995 went. It was the day I had my first baby by way of C-section. I went into the hospital for induction of labor. I was going to have my baby (natural childbirth). They induced me at 9:00 AM and I was in labor until 6:00 PM. At that time I asked for an epidural. This was placed in my lumbar 4 and I pushed for another 3 hours. At that time the baby was stuck. So, the doctor decided on a C-section so we wouldn't hurt the baby. Up until surgery I was controlling my legs. I remember feeling the incision. It was like a tingling sensation. I also remember hearing the baby cry. After that I was knocked out. I came out of anesthesia and was taken to recovery, and then taken to my room. That was about 11:30 PM. At that time the doctor asked me how I was? Tired and weakened. I had become anemic from pushing and surgery. I had a bladder catheter and an IV already attached to me because of surgery. I think I couldn't move my legs at that time. I think they told me it was still the epidural and by morning it would be worn off.

Tuesday December 12,1995
The next morning I still could not move my legs. My left leg was worse than the right leg. I could hardly flex my ankles or point my toes. I couldn't lift my legs off the bed without using my hands. I was paralyzed from the hips down to my toes. My doctor came in and did some little tests. He scraped the bottom of my feet to see if I had reaction - none. He took a pin and poked my feet to see if I had reaction - none. Needless to say, the doctors checked and rechecked their notes to make sure they didn't screw-up. It was a routine C-section. At that time they called in a neurologist. Just by hearing the symptoms, he had two diagnoses: 1) viral infection of the spine or 2) Guillian-Barre syndrome.

Guillian-Barre syndrome (Mosby Medical Encyclopedia definition) - a disorder with inflammation of many nerves. It begins between 1 and 3 weeks after a mild fever linked to a viral infection or with immunization. Pain and weakness affect the arms and legs. Paralysis may develop. The condition may spread and involve the face and chest muscles. There is no treatment other than supportive care.

Needless to say, when they told me about this disease, I was very scared. I had just had a baby and looked forward to living a normal life. They also told me Guillian-Barre was treated with steroids. They told me if it was viral, then it would go away by itself and physical therapy would be used to strengthen my muscles and I could live a normal life to raise my baby. So, I was hoping for a virus. More tests were to be performed the next day.

Wednesday December 13, 1995
The neurologist did nerve tests on my legs. This machine measured the nerves with electrical shocks. It felt like someone taping your knee with the little hammer. He concluded my nerves were working but just asleep. This was a good sign; meaning nothing was damaged. After this test was completed, they sent me for a MRI. The films came back showing an inflamed lumbar 4. I was also very bruised where the epidural had been. I still have my MRI pictures.

Thursday December 14, 1995
My IV was taken out because I was not weak anymore. They did a spinal tap of the fluid around lumbar 4. The fluid was tested. They were looking for Guillian-Barre; the count would have been very high. If it was viral, the count would have been low. The test came back low and I had a viral infection. At that time I was told no medications will cure this, it must work itself out of me like a cold. If it had been Guillian-Barre they were sending me to John Hopkins Hospital in Baltimore, Maryland. I was in Anne Arundel Hospital in Annapolis, Maryland, the birth hospital. It was not Guillian-Barre so that night they sent me to downtown Annapolis to the main hospital. I was put in pediatrics because I was breastfeeding my new-born baby girl and they had cribs.

Friday December 15, 1995 - Tuesday December 19, 1995
These days in pediatrics were used to prepare me to go home. Some time on Friday my catheter was taken out. It was a few hours before my first bladder movement. I was glad I could control that. The nurses were trying to figure out how they could teach me to self catheterize myself at home, not being able to pull my legs up. But they didn't have to worry about it anymore, because my system took over. It wasn't until Saturday, December 16th that I had my first bowel movement, with a little help from a suppository. After that I was pretty regular.

Tuesday December 19, 1995 - Present
I live in a two-story house. I had to have a hospital bed and trapeze, wheelchair with removable sides and a portable commode with removable sides set up in my living room on the bottom floor of my house. In the hospital they started physical therapy. They taught me how to bump-stairs (that is go up the stairs on your rear-end). They taught me how to slide off the bed and get on the potty and wheelchair. The hospital set up a home physical therapist to come. My arms were very strong so this helped me to do a lot of transferring by myself. My parents and my husband's parents took turns staying with us so I had help while my husband was off at work. I needed help with the baby and the cooking and cleaning. I had physical therapy 3 times a week at my house. Each time the therapist came, I was able to do more and more. I had to relearn how to climb stairs. Everyday I had exercises I had to do. This all involved leg weights. Every couple of days I had to increase the weights because I could tell I was getting stronger. It was amazing if I couldn't perform a certain task one day, the therapist would tell me by the next session I'd be able to do it, and he was right. I was amazed at the human body. I now know what it's like to be a baby, because you have to crawl before you walk. Each day I could feel myself getting better. My legs would tingle like when a limb falls asleep. I remember one morning waking up and pulling my right leg over my left without using my hands. I was so happy, I called for my family. On December 28th, 1995 I walked behind my wheelchair for the first time with the therapist. We took movies. It was like dancing. This progress continued. I then went to a walker, then a cane, then no assistance. My biggest fear about walking without assistance was would my legs give out and I fall. The therapists told me it could happen, but as long as I kept improving it probably won't. I do remember that hard-soled shoes were the best for the support. This was all in a time frame of about 2 months. On February 6, 1996 was my last visit to the neurologist. I walked in. At that time I was released from his care and I didn't need to come back unless I felt I wasn't making progress. After that I still did weight exercises and took long strong walks. The neurologist told me walking was very good exercise. My recovery was painless except for muscle fatigue. Through all of this, I was recovering from a C-section, anemia and breastfeeding. I did not suffer any bowel or bladder problems.

It's been almost 3 years from getting TM and I still feel the effects. I have coldness in my feet and legs that comes and goes. Sometimes when I stretch my legs, my thigh muscle will tighten up and my knee will not bend. But I am able to force it to relax back to its normal state without using my hands. I can feel every muscle working, which if you are normal, you don't feel it. My left leg is a lazy leg. When I'm tired I don't pick it up like normal, so I sometimes trip on things. Once in a great while, I have fallen but not gotten hurt. I can't run anything like I used to, and there are times when it's hard getting off the floor without using my hands for help. Especially when I'm holding something heavy. I can still do my favorite sport of snow skiing, boy I'm glad I didn't lose that. I love the snow. My weakness is in the hips. I feel very lucky to have come as far as I did. I continue to walk as much as possible. I had another baby in March 1998 and no complications (natural childbirth). Having two babies keeps me going.

Also, forgot to mention that I do get the leg tremors. I feel it mostly in my knee joints. It happens at night when I'm tired. The way I stop it is to relax and stretch and massage my back. If it's really bothering me, I take an Advil or two and this helps me get to sleep.

Well, that's my story. I hope it helps the study and others to keep going. My doctors didn't know too much about TM, but due to this technology of the Internet, I think I may know more then them. I'm glad I found your website. I thought this was an odd case, but now I know it wasn't. Thanks for the information, member listing and newsletter. I've already contacted a member that lives near my parents in New Jersey. If I get there soon, I'm going to visit him. Can you tell me if any others may have been paralyzed after giving birth? I look forward to hearing from the Association. Feel Free to call me, I'd love to talk to others about this disease. I feel lucky to have come through this as well as I did.

Fellow TM sufferer,
Leslie Hoffmire
3101 Twin CT
Bowie, MD 20715
(301)464-4508