Thread: neuropathy?
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Old 04-25-2009, 11:38 PM
eileenkq eileenkq is offline
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Join Date: Apr 2009
Location: Midwest
Posts: 4
15 yr Member
eileenkq eileenkq is offline
New Member
 
Join Date: Apr 2009
Location: Midwest
Posts: 4
15 yr Member
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My presenting symptom was Peripheral Neuropathy and it was declaired ideopathic. After a few years my reflexes got more brisk I was found to have lesions in my spine which later went away. That is classic spinal MS.

Yes, it hurts and burns like H*ll - all while being numb. This is symptomatic of demylination of nerves. The holes in the sheath of the nerves cause pain and the same holes cause poor transmission between the nerves and the brain (numbness).

I've tried Neurotin (stupid), Amitryptoline (fat), Pregabalin (suicidal) - all with too many side effects to continue. Now I'm taking Oxycontin and Morphine (for breakthru pain). I've gone from 30mg of Oxycontin 2x a day to 20mg 2x a day. I also take 90mg of Cymbalta a day. My pain is actually getting better. My nerve conduction tests have shown great improvement over the last several years. I have been taking ALA (Alpha Lipoic Acid) for years (See my website for more info - I sell nothing on it.) My neuro gives no reason for the change although she said that she has never seen any improvement in any other patient and I am the only one taking ALA.

I want to try the RevImmune therapy for my other MS symptoms especially the balance, fatigue (yes, I take Provigil) and heat sensitivity. I am aware that if I am "cured" I will still have the nerve damage in my feet. I can live with that although I hope it will get better over time, maybe with the help of the ALA. I am tired of being sick.

So that's my input on neuropathy. So sorry you have it. No one understands except another with neuropathy and we wish we didn't understand. Sometimes even the neurologists don't understand. I've had one neuro tell me that there was no association between peripheral neuropathy and MS and she is an instructor at St. Louis University. I'll be glad to give you a non-referral.
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