Thursday, January 15, 2004

> I am curious to know what the next steps are to find out if
> you actually have ALS. Is there a definitive test?

I don't know about definitive, but there is this thing called the EMG where they stick needles into your muscles to observe electrical behavior and look for microscopic twitching. One the one hand my MRI does look like an ALS MRI, and the weakness is typical of ALS. But the tingling and numbness are not, and there is still that low CSF glucose level not equal to blood glucose. If I am lucky then something or maybe multiple things are happening that just make it look like ALS. But even if it is ALS I intend to win.

Looking at the clinical trials I have this gut instinct to trust anything done by a university or foundation as genuine, but distrust anything done by a pharma company as a crude attempt to see if some drug they already have a patent on might help in ALS. As Grandmaster Flash said, "It's all about money, ain't a damn thing funny."

Today I will join the YMCA or a gym, and also pick up some cables I need to download pictures from the new digicam to the computer. Also maybe some other things. Then I have kidwatching duties.

I will also call I guy I know who, years ago, had a mystery degenerative neuromuscular disorder.

OK, I just called him. He has some kind of autoimmune disorder that attacks the peripheral nervous system, not ALS. He asked if I had a network of good people and I said, emphatically, yes. I told him I had been reading about his projects in the newspapers, his art projects, and his advocacy for the homeless. I'll send him and email.

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