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August 18, 2007
What Nerve!

I had another appointment with my neurologist yesterday. A sort of "let's take another look at everything" visit.

He's no slacker. He's won awards, and apparently he is the doc of choice for area athletes.

Right away, MS and ALS were conclusively ruled out of contention; though the doc (and, to be honest, I) expected MS, there was no evidence whatsoever on the MRIs to indicate either.

The cisternogram two weeks ago ruled out hydrocephalus. I do apparently have quite large first and second ventricles, though there is no readily identifiable cause for such. The third and fourth ventricles are normal. The enlarged ventricles might possibly be congenital, or might have been caused by something else sometime in the past (though I do not seem to ever have had any illness to explain the matter) but in any event the neurologist believes it is not active hydrocephalus.

Based on the tests he did in the office yesterday, whatever it is that I have is indeed a problem with the central nervous system. How can he tell? When you go to the doctor and he taps your knee with a hammer to test your reflexes, that's just one of the reflex tests that can be done. Do the same to your Achilles tendon or to the inside of your knee, and you're testing the central nervous system... and mine isn't working quite right.

On top of that is the ongoing and increasing muscular weakness in my legs (though my upper body strength is as good as or better than usual.)

Try this little experiment: sit in an ordinary chair. Then lift one foot off the floor by raising your knee straight up. Easy, right?

Not for me it isn't. I cannot do it at all, which reflects extreme weakness in some muscle or other in the hip area. Nor can I squeeze my knees together or push them apart with any force. I can barely use my hamstrings; my quads are doing comparatively well, but less than half of the muscle mass reacts when I try to do leg extensions.

Interestingly (to me, at least) some of the muscles which don't react to voluntary impulses do occasionally spasm or cramp pretty strongly. There's something there — I just can't control it.

Further, nothing we've seen rules out an additional diagnosis of peripheral neuropathy. The prospects of my ever again walking without a cane or crutches seem, to me, to be increasingly remote.

On the plus side, I'm finally getting a handicap tag for my truck. At least I'll get decent parking wherever I go. It's only good for six months, though — we're trying to be optimistic, I suppose.

More importantly — most importantly — I'm being referred to Duke Med for what might be called an extended second opinion. Seems my neurologist is friends with the head of neurology there. Excellent. I hope in this case two heads will in fact be better than one.

Posted by Russ at 09:00 AM, August 18, 2007 in Health

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So when do you go to Duke to show off your parking sticker?

At least some of the real nasties are taken off of the diagnosis/prognosis list--let's keep praying that once they figure things out, it'll be nicely treatable.

P.S. Are you taking any fish oil? Not just good for heart and brain, but for nerves, too.

Posted by: John at August 18, 2007 10:30 AM

You've got you some grit.

Best of luck.

Posted by: Jim - PRS at August 19, 2007 08:42 PM

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