In Their Own Words

Recurrent Transverse Myelitis
Marcille Pollack
Ann Arbor , MI

Well, here I am doing something that I thought that I would never do; sharing my experience with you about recurrent TM. It all started in September 1997 when I had my first episode. I was having back pain which worsened in the middle of the night and I was also bothered by constipation. When I started to lose my right leg, I decided to see an internist. She could not determine what was wrong with me and made an appointment with a neurologist for that same day. After the neurologist examined me, he said that it was urgent that I be checked into the University of Michigan hospital. An MRI was scheduled for that night. The MRI showed lesions at T7-T11.

I was given IV SoluMedrol for three days followed by a prednisone taper. I had three more MRI’s on the lumbar and thoracic spine and the brain. I also had three spinal taps. Since I had recently been in New England and there was a possibility of Lyme disease, an infectious diseases doctor was called in and he put me on cepotaxime by IV for two weeks. A neuro-oncologist was also called in and he ordered CAT scans of the chest, abdomen and pelvis to rule out a tumor on my spine. A brain stem auditory evoked potential and a visual evoked potential were normal. The diagnosis was idiopathic transverse myelitis which I had never heard of before. I had walked into the hospital on my own and left two weeks later with a wheelchair, walker, bedside commode and ankle-foot orthotic (AFO). My hospital stay was followed with approximately six weeks of physical therapy. By the end of the therapy, I was able to walk with a cane. I had another MRI in December and was able to walk into the room on my own. I was also driving, swimming and was enrolled in a yoga class for seniors. I thought that I was home free; after all, I was told that TM was monophasic!

In February 2000 my husband and I drove to south Florida to visit my brother. We were there two days when I felt the symptoms reappear in my right leg. I was able to get an immediate appointment with a neurologist at the Cleveland Clinic Florida. After the exam and an MRI, I was checked into the Cleveland Clinic hospital for five days of IV Solu-Medrol and another spinal tap. After three more MRI’s, which showed the lesions at the same level as the previous lesions, a tumor was again suspected as being the cause of the TM. After a week, I was transferred to Holy Cross hospital for intensive physical therapy. Most of the patients were recovering from hip and knee surgeries and the PT’s had never had a patient with TM. The PT’s were super and the food, especially the desserts, was great for hospital fare. I was there a month before returning to Ann Arbor where I continued physical therapy and checked in with a neuro-oncologist.

My third episode occurred barely a month after I returned from Florida. I had another MRI which showed lesions at the T3-T4 levels. I was given another three days of IV Solu-Medrol as an outpatient followed by a predisone taper. This was followed with a thoracic myelogram, lumbar puncture and a CT myelogram. No abnormal defects were found that would suggest a neoplasm or arteriovenous malformation. The spinal cord and roots were found to be normal. I saw Dr. Kerr at Hopkins in July at which time I had a spinal angiogram to rule out the 5% possibility that a spinal fistula may have been overlooked in the myelogram. No evidence of a spinal fistula was found. So I was back to idiopathic and back to physical therapy.

I have progressed from a wheelchair to a walker to a cane. I don’t use any aids in the house. I use a cane for walking outside. I very seldom use a wheelchair. I use the bedside commode at night as my legs become numb when I sleep and I don’t want to stumble going to the bathroom. I have hand controls on my car, but don’t drive very often. I leave the driving to my husband as I probably couldn’t manage solo trips. I do experience neuropathic pain and have tried various medications, such as baclofen and pamelor (nortriptyline). I have been on neurontin on and off, and I am currently in the on stage. I have seen Dr. Kerr twice. I had a mild setback in August 2000 and Dr. Kerr suggested to my neurologist that I go on imuran (azathioprine) which is an immuno-suppressant. I was on imuran from August 2000 to February 2003 with no more episodes. There are some unexplainable small blue cells in my CSF (spinal fluid). Dr. Kerr says that he has not seen this in other TM patients’ CSF.

This has been an incredible journey that I would rather not have taken. I am grateful that I live in Ann Arbor, Michigan which has a first rate medical school and teaching hospital. I am also grateful to the Gilmurs’ founding the TMA, Jim Lubin, Sandy, Dr. Kerr and all the others who work so diligently for the TMA. What would we have done without them?