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September 26, 2007
Another day, Another Disappointment

Yesterday was the long-awaited appointment with the neurology and neurosurgery folks at Duke. I went with the expectation that something, anything concrete might result, diagnosis-wise.

Oh, ha ha ha... right. As if anything has gone the way I've expected or hoped with this whole thing.

After a short and to-the-point physical examination, the neurosurgeon got on the phone with my neurologist — and again, I remind you that these guys are the best to be had in this area, among the best in the country — and came to two conclusions.

First, what I have is almost certainly not CIDP. In a way, this is good, because while it is treatable, CIDP is an auto-immune disease that probably would recur in the future. On the other hand, if it had been CIDP, I could be fixed fairly quickly.

Second, another test is necessary... and not one of those fun tests that wind up telling you whether you are a "Fall colors" or "Spring colors" person. No, this will be a repeat of the spinal tap, writ large. A full 24 hours in the hospital, being drained, with physical tests before and after to determine if my nerve and muscle functionality improves after the removal of larger quantities of spinal fluid.

I am not looking forward to this one, except insofar as it might give us the answer. It'll probably leave me laid up for a few days, but it could conclusively prove whether the original diagnosis of hydrocephalus is correct.

Could. All the things that have happened over the course of this episode have been thought to lead to one conclusion or another, and yet none have been fully determinitive. I'm still half convinced that I'll end up with a disease named after me.

It's getting to be awfully difficult to remain optimistic, but I'm trying. I really am.

Posted by Russ at 10:07 AM, September 26, 2007 in Health

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Just a thought. My wife has an auto-immune called RSDS. I presume that they have checked for this.

Posted by: Skul at September 27, 2007 02:05 AM

The prayers continue--and God knows how frustrating and fatiguing this is, Comrade. (And the rest of us have some idea, but it's nothing like being there.)

Eventually, they'll figure it out--let's pray this is the time.

Posted by: John at September 27, 2007 01:56 PM

I'm so sorry :( I hope they come up with real answers this time.

Posted by: Ith at September 28, 2007 01:30 PM

Russ, for what it's worth, maybe you'll get a spot on Discovery's Medical Mysteries show? Keep your head up. You're with the best of the best man. Good luck to you!

Posted by: Andy Sarine at September 29, 2007 09:05 AM

Still praying, hon. Keep the chin up.

Posted by: Beth at October 1, 2007 05:18 PM

I think you've been hitting yourself in the head too much with those cluebats.

Posted by: Steve H. at October 3, 2007 02:11 AM

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