Worth visiting Mayo Clinic for evaluation of idiopathic neuropathy?
Anyone been to Mayo for IPN? Diagnosed 2021 post Covid vaccines with bilateral Idiopathic PN. Had EMG, ultra sounds, anti body testing, all types of diagnostic testing has been completed by PPC and Neurologist. On Gabapentin 3x a day 300 mg. Try everything local MD’s could muster. Now I am on the not much else we can do for you- good luck train. Love to hear of others made this leap. 5-7 day commitment in MN.
Thanks if you have input.
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i was diagnosed in 2002 with small fiber idiopathic periphal neuropathy at the Ohio State University. I woke up one morning and felt like i had a golf ball under each foot. I was 52 then they put me on several potent drugs which i couldnt tolerate so i stopped taking them because all they did was knock me out and turn me into a zombie. at this time I had a wife and 3 children and i had to go to work. The first 10 years i had numbness and burning in my feet and pain that was hard to explain. At 12 years started getting worse and was hard to walk any distance. went back to OSU they did nerve conduction test and told me I was getting worse and would be in a wheel chair soon. Didnt need them to tell me i was getting worse i new that. now it was progressing into my arms and hands and lost my balance almost completly i cant feel my feet or legs from knees down and its continuing into my arms and hads. I am in pain 24 hours a day every day 6months ago went and got another nerve conduction test and my nerves are dead in my legs have atrophy my feet are bones with skin on them< Doctor told me i do 5 to 7 nerve conduction test a week and i have never seen one this bad. I walk with a cane because i forbid to go in wheel chair have lost balance cant walk on carpet cant go in gras. i have feel 2 times and am scared that i am going to break something if i fall again i was in grass when it happened. I dont think i will ever be able to do anything agai just stay in house and go on my deck. spent thoud
sands of Dollars with all the scams saying i
they can help with neuropathy none worked. last one Stem Cell injections cost me 16 kdid nothing. Im done Doctors dont help . I take gabapentin which has affwcted my memory cant stand it but does take edge of. GOD BLESS ALL OF YOU FIGHTING WITH THIS DISEASE I WISH YOU THE BEST.
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