My name is Barbara Schmitt and I have TM.
In 1980, when I was 32 years old, I was diagnosed with remitting & relapsing Multiple Sclerosis. It was diagnosed from symptoms and a spinal tap. It started with my right optic nerve being affected. The treatment at that time was cortisone and to patch my right eye for a period of three months. In addition to the vision issue, my main symptoms were fatigue, poor balance, and an exaggerated sensitivity to heat and cold.
Sixteen years ago, when I was 54, I was with our daughter who was, at the time, having my first grandchild. I woke up one morning and both of my feet were numb. Over a period of a week, this feeling of numbness slowly spread up to my rib cage where I began to have fairly intense and constant pain.
Upon returning home, I had an MRI done which showed a lesion on my spinal cord at the T4 level. At that time, they told me that it would probably last for six weeks. I was not given any additional treatment at this time and they continued to diagnose my problem as MS.
One year ago, I was progressing in my symptoms, adding major bowel and bladder problems to the list. I went for treatment for both of these problems. I was diagnosed with a lazy bladder and have lost the ability to Kegel. Around the same time, I was told that my entire colon does not have proper muscle tone or peristaltic action, which explains my severe constipation problem. I went to rehab to learn how to use my abdominal muscles to help me with this challenge.
As a result of all of these problems, I had another MRI along with other tests which brought my neurologist to the diagnosis of Transverse Myelitis. Upon getting the diagnosis, I undertook some research into this disease that I had never heard of before and concluded that I could be a poster child for this disease given that I have so many of the challenges of TM.
Last May, we went to a wedding out of town and while we were there, I suddenly experienced severe dizziness and could hardly walk. We ended up in the emergency room, and I spent two days in their emergency observation center. They ran multiple tests including a brain to butt MRI. The neurologist that took care of me, after some research on her part, concluded that I had experienced a TM episode (I hadn’t known there was such a thing) caused by the scaring on my spinal cord and that I never had MS.
I was very pleased to have found out about the Rare Neuroimmune Disorders Symposium. I look at this as an opportunity to learn about and also meet people that are challenged by this disease. I am also thankful that there is a time for caregivers to share their feelings and frustrations.