Mark Small

I went through 4 MRIs, a lumbar puncture (spinal tap), enough blood work I should have been fully exsanguinated, & other tests I can’t describe. I was told the results were clear: MS. Besides, I was told the onset of symptoms were so dramatic MS “it.” 3/17

I was put on steroids & was able to hobble about on crutches. Once out of the hospital I wanted pizza - nothing quite like being on steroids in the hospital in week before the Super Bowl watching (seemingly) non-stop pizza ads. 4/17

I read about MS & realized that neurologist did not know a lot about MS. I also read an MS patient represented $250,000.00 over the course of treatment to a lucky neurologist. New drugs to treat MS were out - and expensive. 5/17

I discarded the crutches & began to race walk. In late ‘98, I decided to do the Indianapolis 500 Festival Mini. After I finished in under three hours, I promised myself I would continue to do the Mini until either I was dead or could not walk at all. 6/17

I would not let MS “beat” me. MS is easily misdiagnosed and it gets worse, but each year I was in a “stall” to start the Mini. Then, on the morning of my 60th birthday, at an appointment with a “new” neurologist, I received bizarre news. 7/17

The neurologist shook his head, sort of grinned, glanced at the file, and said, “I don’t think you have MS.” There was a pause. I was stunned. He continued, with MS you get worse. I only had experienced one exacerbation, or attack. 8/17

When I went downstairs to have blood drawn I flashed back to the hospital in 1994 and how I was wheeled around the hospital for tests and asked to show my wrist band, tell them my name and say what I was there for. 9/17

In 1994 I’d choke up as I answered, “Multiple sclerosis.” In 2015 I tried to tell the phlebotomist I didn’t have MS, but found I couldn’t talk very well because I was crying. I held it pretty well as I left and walked across the lobby. 10/17

There were people there, I was pretty sure, who were facing bad news for themselves or a loved one. They did not need to see someone else in tears, even tears of joy. I got to my car, started the engine, turned on the AC, and sat. 11/17

I called a colleague, told her I had really great news, but not to be alarmed because, as I told her the news, I would cry. About 2 minutes later we both were sobbing. That afternoon was a good birthday celebration. 12/17

Couple of weeks later neurologist told me I do not have, and never had, multiple sclerosis. I probably had a virus, traces of which long gone, along w/transverse myelitis. The initial treatment would have been the same as I had received in 1994. 13/17

I still experience effects, some of a personal nature. I can’t handle high temperatures, but the numbness in my feet disappeared shortly after the mercury amalgam fillings in my teeth were replaced with porcelain. 14/17

I learned a lot about myself, a health care system in which too many corporate entities abound & patients are treated as sources of profit. In 2018, for the first time, according to NPR, more doctors are employed rather than self-employed in the U.S. 15/17

No one should mistake that I learned a hell of a lot hitch hiking to Maine in 1975, but hey - you can read about it in my novel “Nineteen Seventy-five.” I learned a lot about myself in 1994 and onward. 16/17