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Should I see a Neurologist who specializes in PN?
Neuropathy | Last Active: May 26 9:19am | Replies (25)Comment receiving replies
Great question and simple answer is a resounding YES! The trouble is, you likely won’t find a neurologist who specializes in PN. If you have a lead, follow it. I’m in the group of “I won’t give up, there has to be answers, there must be better treatments available, they must find solutions”. I’m following leads on mitochondria health to support nerve health at this moment. So I want to offer a positive, encouraging response, but I have to add, I haven’t found a neurologist worthy of the title. I haven’t come across a neurology department that has anything to offer. I’m having to be my own advocate. Don’t give up.
Replies to "Great question and simple answer is a resounding YES! The trouble is, you likely won’t find..."
@johnjp WOW johnip, you took the words right out of my mouth. I have been searching for a neurologist who specializes in idiopathic PN, for 5 yrs, they just do not exist.My GP sort of agrees with me. My GP is in anew practice,now affiliated with Univ. of Florida health care, she is doing research on finding a neurologist who specializes in PN.. UF is a teaching hospital, therefore I am encouraged there may be a possiblity in finding somebody. I have not been to a neurologist in 4 yrs, all they want to do is up the gabapentin. NO NONO!! I am not in any pain just numbness, tingling and occasionaly thighs will burn.. I find that exercise and suppolements such as R Alpha Lipoic Acid. Bentofiamine, and Acytl help,I know spelling is incorrect. I am in vestibular PT now, trying to retrain my brain to walk better, do curbs, and trying to walk on uneven surfaces,grass, sand mulch, etc. I think at times it is working, hoping so. Good Luck and Mayo Connect is wonderful for new up to date info. One can take it or leave it and its free!!! Best Wishes
I totally agree and also want to sing the praises of this site. I actually
found my diagnosis here after googling reasons for numb and tingle
sensation in feet. All of us contributing not only our stories but what we
have found helpful or "don't waste your time or money" stories will help
one of us in narrowing down our own ways to live with this
debilitating disease. We are the generation after all that spoke up when
needed during Vietnam war, equal pay, etc. etc. We will find ways here and
elsewhere to live out the rest of our lives with some joy
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@johnjp
I am with you--I will not give up. I will still go to a neurologist but when I go to him, or any other physician, I must be my own advocate. I, too, am following mitochondria health. My neurologist did blood work that uncovered that I have celiac disease and that is why I have neuropathy which has worsened this year (maybe due to shin biopsy or else cold winter). So even though he may not be a specialist in PN, he did me a solid favor because now I can be on a gluten free diet and try to build my health up that way. I have already seen some improvements in form of no more night sweats and no more breathing difficulties. Foods cost more and I need to prepare my own meals, lest risk gluten contamination. I had to throw out lots of food when starting my gluten free diet last July. I am eating out alot less but I now know what is on my plate. Knowing the cause of neuropathy can allow us to make the dietary and lifestyle adjustments needed to bring about better management of the disease. Yes, some sacrifices may be needed. I also believe that doing some kind of exercise, whether physical therapy or own regimens, will help us avoid frailty, falling, etc. I am also doing vitamin supplements because celiacs have problems with absorbing nutrients There is no one size fits all here! There is knowledge to be obtained and will power is paramount too. We must keep trying!