14 October 2009

MS Story -- Years 15 - 16

Picking up where I left off, by the spring of 2002 I had had MS for at least 14 years without anything much in the way of exacerbations and no real ongoing symptoms. I had the occasional transitory sensory weirdness -- part of my tongue would seem a little bit numb, or a patch on my right forearm would feel sunburnt (in winter? in Seattle?). When I described the tongue thing to my dentist, he looked at me like I'd grown two heads. After that, I referred to these little things as my "stupid symptom of the week", and tended to keep them to myself.

Then, over the course of a couple-three weeks, I went numb from about the waist up. I could move my arms and hands just fine, I just couldn't feel anything. I couldn't tell if my fist was open or closed unless I was looking at it. Let me tell you, washing your hair is a very strange experience if you can't feel either your hands or the back of your head. Picking things up was awkward, writing with a pen or pencil was a joke, and using a keyboard was totally in the can.

I did a three day hit of steroids, which tasted yucky and turned my face red, but had no other noticeable effect.

The numbness partially remitted at a steady but glacial rate over the next two years, with no new exacerbations. I talked to the neurologist about starting one of the disease-modifying drugs, but decided not to at that point. (Not a decision made lightly, but a topic for another time.) I could use a pencil, kind of; I could use the keyboard, kind of; I could play music as well as I ever did, which is not saying a great deal. I found it hard to memorize new music, but I always did. I could still understand the bizarre things the programmers told me their software was doing. I'm not sure what that says about my cognitive processes, but it kept food on the table.

So I'm 16 years into this thing, and my hands are kind of numb. It's more disabling than you'd think, but still, not too bad, considering.

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