Friday, January 23, 2004

Ambiguity is Good!

Most people think Stephen Hawking has ALS but my neurologist says that Stephen Hawking has PLS, primary lateral sclerosis, a very slowly-progressing condition like ALS that typically strikes teenagers. ALS is usually diagnosed after 40 and Hawking was diagnosed at, I think, age 21, after ignoring it for a year.

My neurologist did an EMG on me this afternoon. I think it stands for electromyogram. But I have no idea. It means sticking needles into your muscles and looking for the electrical impulses. The doc tells me that normal people will show no signal at all from muscles at rest. There is no definitive test for ALS that I know of (since they don't know what causes it), but the doc says that the EMG is the main, most indicative test for ALS. In ALS, the muscles will show spikes, basically, of electrical activity even when at rest.

He stuck needles in my left deltoid (front shoulder), biceps, inner thumb muscle, and outer pinkie muscle, as well as my left inner knee and right inner knee. I do have noticeable twitching in the muscles of my left hand from time to time (it even happened several times while he was testing me), and once in a while in my left leg.

I took lots of pictures but I can only upload one per day to, so I bid you enjoy this one. Only one small blip on the monitor, that I see.

My left deltoid shows some infrequent blips but not as much as expected with ALS. He said it seemed almost normal. The biceps and knee were next and those seemed normal to him, with even fewer blips than the few blips of the deltoid. Maybe even none. Then he poked my left inner thumb muscle and my left pinkie muscles (in the hand down below where the joints start). These were also almost normal with the occasional stray blip.

He tested the electrical activity when I was using the muscles to push, and I was supposed to be able to fill up the output screen with impulses, and mostly I did, except for a weakened signal for moving in a couple of instances, which (I think) were the left pinkie spread and left leg lift.

I asked him if the EMG results were ambiguous and he said they were. He started talking about the possibility of some rare form of atypical ALS or other neurological condition.

This is encouraging to say the least.

And in ALS the muscles underneath the skin should be constantly shimmying, due to all the random electrical activity. This should be visible to a careful observer. He doesn't see that in me.

He talked about upper nerve disorders (in the brain) versus lower nerve disorders (in the spine). He said that ALS involves both. My EMG results led him to say that while I show upper nervous system problems (the brain lesions seen in the MRI, and the left-side impairment), the evidence of lower nervous system problems (as would be shown by the EMG for someone with ALS) is lacking.

He mentioned that my lab results show a CSF myelin protein level of 3.0, while normal is less than 3.0 This indicates possible myelin shedding. Myelin is the insulation around nerve cells, and when you lose it, as in MS, the nerve cells stop sending signals properly and, I believe, eventually die.

He also noted that one of the three indicators for Lyme disease on my lab results was in the "indeterminate" range while the others were insignificant (good). I was negative for the signal of prior Lyme infection, but it is possible I am just getting one. He is going to have them redo the Lyme blood test. I'll go have blood drawn Monday. Lyme is treatable with intravenous antibiotics. But it is treatable.

While my left hand is still very weak, the doc felt that in many of the strength tests he did on me today, my strength is normal. He does not note any deterioration since he first examined me and the day he diagnosed me on 1/13. I asked him if there should be some progression and he said it varies. I told him my sense is that the large muscles in the arms and legs are doing much better than the small muscles in the hand and foot.

So I am getting my hopes up that the people at the ALS center will test me and reject the ALS diagnosis. If that happens, then I am left with a scary Mystery Condition involving motor impairment, atrophy, and brain lesions. But that would be better than having ALS.

I stopped cracking my knuckles in 1997. It is a horrible habit. Call me crazy but I wonder if I should start again. Maybe it provided some kind of feedback or hormone or protein release or something. Today after the appointment, I cracked the knuckles on my left hand, with no joy but also no guilt.

Oh, and I weighed myself on the real scale at the doctor's office, wearing a t-shirt, socks, underwear, a watch and a paper medical gown. 137. Who know how much I weighed on Christmas Eve. My guess is 133.
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