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Hey all. I have lurked on this board for about a year. Now I need a bit of advice.
To keep it brief, I started experiencing the classic symptoms (burning, tingling, electric shocks in my feet) in January 2007 (age 26). By April 2007, the burning had spread up to my knees and sometimes to my arms. At the time, I was seeing a Mayo Clinic ortho who referred me to one of their neurologists. He tested me for everything under the sun & of course, everything was negative. My NCS showed no large fiber involvement, so he dx'd me with SFN & eventually titrated me up to 4000mg Gabapentin. After the gaba didn't work, the Neuro was out of ideas. I boycotted all neuros & bounced around from rheum to rheum b/c of a dx of fibromyalgia the previous year. I am now 35. I cannot believe it has been ten years. After the gaba, I tried Elavil, Savella, Ambien, Zanaflex & Flexeril. None of them worked, except the Flexeril, but it didn't last long. So after that, I boycotted every doctor in my phonebook. This year, I came to my senses & went back to the rheum. He has tried Cymbalta & Effexor, but they didn't work on the fibro or the neuropathic pain. I just got an 3rd to try Lyrica, but it is so expensive. I got an appt with UF Health (formerly Shands) in Jacksonville, FL. I had a skin biopsy last week & apparently this Neuro thinks my SFN is non-length dependent since it progressed so quickly. On to my question. Last year my thyroid was removed. I am now on Levothyroxine, but I read somewhere that you can't take Levothyroxine & ALA together. Is this true? If so, what other supplements can I try? I'm not sure what could have caused my neuropathy. I think I had a UTI before the symptoms started, so maybe it was the antibiotics? I don't drink, have never had chemo or been exposed to toxins (to my knowledge). My blood sugar is normal. I do have mild spastic cerebral palsy & have wondered if there could be a link. I developed idiopathic gastroparesis in 2010. Surely there is a connection between the SFN & GP. I am really ready to take my life back, but I don't know what I'm doing. Does the GP mean my SFN has become autonomic? What should I be doing while I wait for the biopsy results? |
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