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Old 06-23-2008, 11:05 AM #1
NummyCat NummyCat is offline
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Join Date: Jun 2008
Posts: 5
15 yr Member
NummyCat NummyCat is offline
New Member
 
Join Date: Jun 2008
Posts: 5
15 yr Member
Default Chronic Demylinating Polyneuropathy! Help please!

Hi! I am new to the forum and actually posted in the new member section. I was diagnosed with a Sensory/Motor Nerve Neuropathy with also some muscle changes and this started in 1993. It comes and goes with some mild attacks along with some major attacks.
I swear up and down I have MS and there are some white matter lessions on the brain but not in the typical areas for MS. My last EMG they did on me showed a Chronic Demylinating Axonal Polyneuropathy in a severe state.
I get spells of numbness and tingling that drives me nuts! Sometimes when the attacks are bad it makes me dizzy and sick feeling. Fatigue along with it! My eye acts up and goes blurry too off and on.
I have shown some positive ANA's, Anti DsDNA, a C-4 which was low. High white blood counts and few other things but nobody seems to give me any answers as to why I am so darn sick! I get nerve pain something aweful along with joint pain. Lets just say I stay in pain just about 24/7!
They have tried me on Elavil and I got sick, Nortriptiline and that was nothing and did nothing. Tegretol made it worse. I have been on Neurontin and that makes me woozy the next day making me want to do nothing but sleep and feel funny in my head. Zanax .25 is too low in RX and they won't up the dose. Clonipin at bedtime for sleep 1 mg. That seems to help but am only allowed that at bedtime. Most of the doctors I have seen don't want me on the addictive drugs and keep mentioning anti-depressants. They want me to try Cymbalta. Okay! Tried it and was up two days and am now scared to death of it! Any of you take a certain drug that is non addictive but helps stop numbness and tingling without getting bad side effects. These new drugs they are coming out with scare me to death. One doctor placed me on Ultram ER and I thought I was going to die! Alot of doctors now don't want their patients on addictive drugs so what is out there that helps neuropathy that I can use. Tired of being sick and tired and wished they had a good drug that worked.
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