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Old 03-22-2010, 08:49 AM #1
amit amit is offline
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Default Primary doctor

I have some problems with my primary doctor. I was DX with small fibers neuropathy about 2.5 years ago (but have symptoms since 9.2005). The neuro. who DX is one of the best here for peripheral neurology, but he is from a different area. so, my doc. thinks I'm inventing everything, eventhough she got a letter from him.
I need a good review that discribe SFN.
Do you know of any?

Thanks

Amit
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Old 03-23-2010, 03:11 AM #2
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Good luck finding another Doctor, how terrible that she thinks you are making things up, that is the problem with SFPN, no one can feel the pain or see what you are going through. I wish you luck.

I found a website on SFPN

www.smallfiberneuropathy.net/

hope that will help.

Lesley

Last edited by lesley21; 03-23-2010 at 03:22 AM. Reason: adding more information, spelling
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Old 03-23-2010, 05:58 AM #3
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Default In the Useful Websites stickies--

--there are a number of sites that talk about small-fiber syndromes; one should look for names like Vinik, Treihaft, Poncelet, Latov. (I have a number of these in my sections there.)
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Old 03-23-2010, 06:04 AM #4
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It is surprising how many doctors believe people with SFN to be simply malingerers. Here is a good document I found just a couple of days ago. It is published by The Cleveland Clinic, and is intended to educate doctors about SFN:
http://docs.google.com/fileview?id=0...ExYmY5NzdjYmQx
__________________
.

.

.
My SFN story:
.

Last edited by Chemar; 03-26-2010 at 05:33 PM. Reason: link updated for member
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Brian (03-25-2010), dahlek (03-24-2010), lesley21 (03-25-2010)
Old 03-24-2010, 09:57 PM #5
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Default Good find! Nice intro to the who's and what's...

That site should go up into the stickies... It is in plain English and easy to be understood by most. That's a good nutshell of Intro to PN 101!
Amit? IF your insurance plan allows it? Go and get a second opinion w/the same info you gave to doc#1? Who knows? You mite get lucky and find a doc who will actually CALL that prior doc and ASK questions! Should that happen? It could become good. I don't know how big a city area you live in to clue you in to how to find and choose better docs in your area? PM me and I mite be able to help - No guarantees tho.
In the meantime? Finding a doc who will 'do' and not kill ya is often a challenge. Lucking out and finding great docs takes a lot of homework and good luck! I truly hope that you win the 'doc lottery' and soon!
Keep listening to yourself, try not to get too scared and fight your way to the top of the medical!
Hugs and hope 's - Let us know, please? - j
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Old 03-25-2010, 07:57 AM #6
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I dont know where you are,, but inmy opinion, GP;s arent just up to speed on PN, or SFN,, which has to be the most painfull condition known to man, there good for treating sore throats, and high blood pressure,, but when it comes up to teh neuro stuff,, they just are inover there heads,, thats when they need to admit it and get you to a GP that has a clue about all this, one who can manage your care,, and get you to the right people,, yes its hard,, and I in the same boat as you,, mines good for filling out forms,, but he has admitted that its all over his head and pretty much lets me hanging,,
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