Civil Discourse Now

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Personal experience strengthened me: misdiagnosed with MS

Last week in a “town hall” of candidates in the June 2 GOP primary for INCD5, the first question caught me off guard: something like what experience in my life enables me to be a good U.S. Rep (& maybe my memory of exact wording of the question is off).
My answer: when I hitch hiked to Maine in undergrad I learned a lot - and I did, but something else taught me a lot about myself. In January, 1994, I was diagnosed with multiple sclerosis. By the second day nine in the hospital, I was paralyzed from the waist down.
I went through four MRIs, a lumbar puncture (spinal tap), enough blood work I should have been fully exsanguinated, and other tests I can’t describe. I was told the results were clear: I had MS. Besides, I was told the onset of symptoms were so dramatic MS “it.”
I was put on steroids and was able to hobble about n 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.
I read about MS and 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.
After a couple of months I discarded the crutches and began to walk in the morning. In late 1998, I decided to walk the 13.1-mile Indianapolis 500 Festival Mini-Marathon®. In May, 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.
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.
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, “MS is a progressive disease. You get worse. From what I can tell, you only have had one exacerbation.”
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.
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.
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.
I called a colleague, told her I had just seen my new neurologist, that I had really great news, but not to be alarmed because, as I told her the news, I would cry. About two minutes later we both were sobbing. That afternoon was a good birthday celebration.
A couple of weeks later my neurologist told me I do not have, and never had, multiple sclerosis. I probably had a virus, the traces of which were long gone, along with transverse myelitis. The initial treatment would have been the same as I had received in 1994.
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.
I learned a lot about myself. I also learned about a health care system in which too many corporate entities abound and 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.
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.
I’m Mark Small, a candidate for U.S. House in INCD5 in the June 2 GOP primary. I’m proud to be pro-choice, pro-civil rights, pro-voting rights, & pro-environment. I also favor single payer health care. I approve of this blog. Hell, I wrote it.

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