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← Return to Regional neuropathy centers?
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Hi Mike, your journey with idiopathic neuropathy sounds idetical to mine. After 8 yrs of being diagnosed I nor neurologists have any answers. Up your Gabapentin, NO! I am on 300 mg a day and will only increase if I Feel necessary I have been through pt many times, accupuncture, red light therapy, stand on vibration machine, which I think MAY help, I go to gym 3-4 days a week ( which I know helps) take R Alpha Lipoic Acid, Bentofitamine (sp?) magnesium, turmeric, B12, Biotin. Do all these supplements help? I dont know, however afraid to stop. I have dismissed by 3 neurologists, stating if you need another appy just call. Another Dr told me there is nothing I can do for you. My GP is my Saviour, she helps, has suggestions on care. Had MRI of brain and entire spine, all looked go according to neurosurgeon. SOOO bottom line, take supplements, EXERCISE, gym and swimming in summer, even though I live in Fl. eat whole foods, and watch for scams. Read Mayo Connect daily, if possible. I have jearned more on this site than any Neurologis, my opinion, this disease is much too complicated, all neuropothies are different, therefore hard to treat. My dream is to have a doctor that SPECIALIZES in neuropathy ONLY! No such Dr. exists. Oh well, best wishes to all
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@allegheny Thank you for you reply! I also work out 3-4 days per week and agree that it helps, both mentally and physically! The best I feel is when I can walk outside 2-3 miles a day in the fresh air. Living primarily in Minnesota that isn't convenient or practical in the winter. I do travel to warm spots for periods of time and can't wait to get outside and walk! I'm on 300 mg Gabapentin and take it before bedtime and without it my feet will burn and ache at night. I also take ALA but you mention R ALA. Is that supposed to be better? I need to check that out.
My GP is also very good, as she was the one who initially recommended the Gapapentin that has helped. Trouble is in today's world is that every Doc is on the clock and so many rush you along and don't seem to have much empathy. Fortunately I have a few specialists that truly care (My urologist, gastroenterologist, cardiologist, and ortho/spine specialist). Neurologist just went through the motions and Mayo Clinic has no interest in seeing another patient with idiopathic peripheral neuropathy! Guess what! I feel better now and plan to get in a good workout followed by watching my 10 year old twin grandsons play an important hockey game today! Thanks for your assistance!!