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Date Posted: 12:32:48 05/25/00 Thu
Author: SAM
Subject: Re: Undx'd? Now I'm beginning to understand why.
In reply to: Tara 's message, "Undx'd? Now I'm beginning to understand why." on 06:49:46 05/25/00 Thu

> When I have the time and energy, I look around for
> other undx'd folks. While going through these at the
> Cleveland Clinic, I found this quotation from a doctor.
>
> "Wish I had something better to tell you. Despite
> our best efforts greater than 50% of neuopathies are
> undiagnosed by cause. At this point with such a
> complicated case with so many tests being completed
> the only advice I can give you is to recommend an
> evaluation at a center that has a very strong
> neuromuscular program so that everything can be
> reviewed in detail to make sure that nothing is
> missing. If you wish a consult at CCF call 216 444
> 5559 and ask for a referal to one of our neuropathy
> experts."
>
> FIFTY PERCENT?!? Peripheral neuropathy is only ONE of
> my problems. It appears that every neurology forum
> has a lot of undx'd and desperate folks. We are not
> alone. I don't think doctors are prone to tell folks
> about how difficult it is to diagnose neurological
> diseases. Perhaps if they did, we wouldn't be near as
> defensive about our situations. What do you think?

I think maybe if they admit they just don't have a clue it would make them less "god like" in our eyes personally I welcome a human side! My nuero did tell me he just didn't know what was going on and that sometimes brain chemistry got out of wack and that by giving me the drugs I am on Nuerontin and Zanaflex it might jar it back.....
When I asked him right out if I had MS he said I can tell you right now no, can I tell you in 5 years you won't develop into it no. I think he is covering his ass and I can't blame him for that and at least he's been honest with me. He's been willing to allow me some control over the dosage of my drugs which has given me at least some sence of control.
He is not a MS specialist though and I feel at some point I need to be evaluated by one, but I am not able to take that step right now, sounds weird doesn't it. My husband has gone about making sure that our new house is capable of being available to me no matter what the future holds and I find that frightening.
And boy have I gotten way off from responding to the message. I am feeling like I am having another bought coming on as I am feeling confused, walking into doors again, the buzzing has gotten worse in the last few days and I have blurriness in my right eye again.
Well I have a call in to my nuero anyway as my pcp didn't call me back and then of course after I called the pcp did return my call... OH well I haven't felt the need to check in since february so I guess it's about time anyway.
SAM

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