← Return to Worth visiting Mayo Clinic for evaluation of idiopathic neuropathy?

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Profile picture for allegheny @allegheny

Hi, I have been on the large fiber idiopathic neuropathy journey for 10 years. I have no pain, just burning thighs and tingling. I am on 100mg Gabapentin 3x daily. (lowest dosage) It does help with the burning. I also take R Alpha Lipoic Acid, Benfotiamine 300mg, Acetyl L- Carnitine 750mg. I like to believe that these OTC drugs are helping. I also believe exercise is the main key. I do water aerobics 2-3x a week, indoor pool at local college. I try to go to gym 1-2 days a week. My chief complaint is BALANCE! I am back in PT and this time the therapist listened and is doing sensible workouts for me. Lots of strerching, squeezing glutes is extremely important I have learned to strengthen glutes helps with balance. My next visit is outsise and doing curbs. (I try to avoid and he is going to prove to me that I am strong enough to handle curbs, also he will have me walking in GRASS, another fear I must overcome. He is wonderful, he does everyday challenges, with balances I have grown fearful of. However I cant go to PT forever so when finished it will be up to ME to carry on, I am overcoming fears and dont want them to reappear. Its retraining the brain, must keep thinking I can do this, with safety in mind and do it. I am 83 yrs old and retraining the brain after letting it take over for the last 4 yrs, that is when balance issues started, but 10 yrs with IPN. I do not do neurologists anymore, they are useless in my opinion, we have to help ourselves and read MAYO CONNECT!

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Replies to "Hi, I have been on the large fiber idiopathic neuropathy journey for 10 years. I have..."

@allegheny thanks for your post. I agree it is up to us as there is no silver bullet. Best to you, Mike C

@allegheny
Ironic that you and I are almost the same age and having such a similar journey. I also believe that overcoming fears is important. I thought gabapentin is for pain so I am surprised to read that it is helping you.
Connect has been so helpful. It has been very difficult to accept that doctors have no answers and no effective treatment plan.