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One day was normal. The next day was not. It’s a typical theme for people with Transverse Myelitis. Like many others, I can name the day it happened, and I can describe the confusion and denial that surrounded me in those first few weeks.
On December 7, 2015, I bought a new phone at Target with my husband, then headed across the parking lot to our favorite restaurant. After dinner, while walking to the car, I had an odd feeling in my lower left flank. It was similar to “side cramps” from over exertion that I remembered from gym class. The previous weekend, we had walked for hours around New York, so I chalked it up to old age and went home to bed. The next morning my left leg was numb and tight. Refusing to think it could be anything serious, I decided to ignore whatever was happening and left for work. Entering the train station, my husband noticed me dragging my left foot. I said I would be fine but agreed to see my doctor if it got worse. That morning, it did get worse. I called my doctor, and he saw me immediately.
During a quick exam that afternoon, my doctor became concerned. He referred me to Neurology where I had an MRI and CAT scan. Stroke and degenerative spine disease were ruled out. The neurologist referred me to the Emergency Department, where a doctor said it might be shingles. By 2 am, my HMO decided to transport me to the stroke unit of a major hospital nearby. I had additional MRI’s of my brain and upper spine, which all looked fine. My blood work came back normal with the exception of low copper.
After my first full day in the hospital, my left leg felt like it was filled with Jell-O and electrical impulses. That was the only time I was in real pain. On my second day in the hospital, I fell out of my bed. I had also developed foot drop and could no longer walk. It felt like my leg was resting on marbles.
I would spend a week in the hospital, with no definitive diagnosis. Because of my age – 62 at the time –doctors continued to focus on a stroke or degenerative spine disease. Eventually stroke was ruled out and I was transferred to a rehabilitation hospital where I received excellent physical therapy over the course of seven days.
In one week I went from a wheelchair to a walker, and finally to a cane. Two weeks later I was walking unaided – wobbly, but optimistic of a full recovery from whatever I had. While I learned to stand and walk again, even with numbness, my symptoms seemed to vary each day. My right foot felt extremely hot or bitterly cold. My reflexes were out of control and my left leg became highly sensitive to changes in temperature.
About four weeks into the mystery, my final test was a lumbar puncture, and still all appeared normal. That’s when my neurologist said with some confidence, “this looks like Transverse Myelitis.”
In retrospect I had symptoms about a month before the major onset. I fell on a New York sidewalk. My calf muscles became rock hard. I had an isolated brief moment of confusion while standing at the kitchen sink. I started to sit down when brushing my teeth in the morning.
I know I’m lucky compared to others. I returned to work full-time in one month. I walk unaided. My left leg is still numb with limited motion and I still have banding on my left flank, the most bothersome of my symptoms. My right foot continues to have feelings of extreme heat or cold. A year later, I am slowly improving my range of motion and gaining more control of my left leg.
In my role as a hospital social worker, I now educate the physicians on my team about TM.
In December 2015, I was unable to stand or walk. Recently, I climbed atop an Indian elephant for a short ride in the warm sunshine. I’m grateful, and not taking anything for granted.
Terry Onderick
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