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The Power of Uncertainty

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It feels cold.” Those three words changed my life. In the summer of 2004, I went to a routine medical checkup. I was a fit 38-year old mountain biker and hiker, and there were no significant questions for the doctor or myself. As he prepared to leave, the doctor asked me if I had any other concerns. I mentioned that I had a small rash on my lip. The doctor quickly determined it would resolve with some over-the-counter cream. As he started to leave, I added one more note. “It feels cold.” The doctor turned around as I explained, “It’s weird; it’s like I’m holding a piece of ice on it.” He frowned and referred me to a neurologist for testing. I rolled my eyes and thought, “doctors love their tests; it pays the bills.” While it was surely a waste of time, I decided to follow through. A couple of months later, I met with the neurologist to review my recent MRI brain scan results. By this time, the rash and cold sensation on my lip had disappeared. The neurologist said, “You look like the kind of person who would get on the Internet to figure out what things a brain MRI might turn up. Let me tell you what it’s not. It’s not a brain tumor, it’s not ALS, and it’s not a bunch of other things you don’t want. But I do think it might be multiple sclerosis.” With no symptoms at hand, I was skeptical. Unfortunately, subsequent testing and specialists confirmed the MS diagnosis.

Multiple sclerosis tells the body’s immune system to destroy the brain and nervous system, which tends to be a bad thing. Those of us with MS really are our own worst enemy. It’s unpreventable, unpredictable, often painful, and currently incurable. Medication can slow but not stop or reverse disease damage. It affects each patient differently, the impact can be a nuisance or nuclear, and there’s no way to know until it happens. It’s rarely fatal, but it cuts life expectancy by about 10%. Aside from disability, complications, and fall risks, people with multiple sclerosis are twice as likely to die from suicide. When I received the MS diagnosis, I didn’t know any of this.

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