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Undiagnosed neuropathy and weakness
Neuropathy | Last Active: Jul 4 4:32pm | Replies (26)Comment receiving replies
How frustrating for you. Have you been to Mayo? Also did this all happen after Covid vaccine? Mine did...I have total lower. body neuropathy with vibrations down my legs. Two major Medical School University evals (Columbia and Medical Univ of So Carolina. ALways the same diagnosis...ideopathic..not diabetic, or due to alcohol or chemo. I believe definitely related to vacinne. My treatment is zero..gabapentin does nothing. This is so debilitating and the progression is frightening. Oh, by the way, I have small axon...If I had the other type( CIDP), I could get the newly approved med Hytrullo (made by Vvygart). Keep searching...maybe an older neurologist who won't give up on your situation.
Replies to "How frustrating for you. Have you been to Mayo? Also did this all happen after Covid..."
I have never been near any COVID vaccines but ended up with neuropathy--may be due to some medicine I took for sinus or perhaps due to the infection itself. A salesman at my local appliance store has idiopathic neuropathy--he had long COVID plus took vaccines for it. He has severe balance issues and tried immunoglobulin therapy but to no avail. Perhaps you can add some vitamins to your regimen as well as doing physical therapy. And, yes, not all neurologists are the same so we must keep on the lookout for the sage ones!
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Thank you! I have not been tested for small axonal. Gabapentin and Baclofen do seem to help with the painful spasms and burning in the feet and legs. Yes, I have had all of the Covid shots but not willing to go there yet, lol. But I would definitely like to check out SFN. I have had EMGs, but not sure they catch small fiber neuropathy. Thanks so much again!