Worth visiting Mayo Clinic for evaluation of idiopathic neuropathy?

Let me know if you go rybren, maybe we can go together and get a package deal!

I'm dealing with (possibly small fiber) idiopathic poly neuropathy since late 2016. It started with feelings like I was stepping on a pebble(yet nothing was there) and quickly progressed into numbness, burning, pins and needles, worst on the bottoms of both feet. Quickly it progressed to about mid calf and stayed that way for several years, until now I feel burning sensations all the way up both my legs into my torso, and also most recently, in my hands. I also get occasional "bee sting" sensations, which can occur anywhere in my body. Most recently I have concerns about changes in my balance. Although I'm not limited, except for the days when it gets me depressed and I lack motivation, it is relentless, pure torture.

So I'm determined to find the cure! I'd love to know the cause, because that would help us to address the issue, but if I never find the cause, I definitely hope to come up with the way to help my nervous system settle down, and get the nerves to heal, regenerate, recover. The neurology field is derelict, IMHO, offering something so lame as "idiopathic" as some sort of explanation. My neuropathy journey began soon after starting statins. Coincidence? This is my chief suspect at the moment. I'm off statins now, but perhaps the damage was done? I just don't understand why our advanced western medicine cannot actually examine the nerve tissue, in the hope to see what is actually happening to the nerves, so as to come up with a legitimate Dx.

I had thought to get to Mayo a while back, thinking a multidisciplinary approach might help specialists to go beyond their very narrowly focused specialties. It sounds like many of you understand the "dead end", where a specialist finally determines, "Well it's not my area, I don't know what to suggest next". Then I came across something that said medicare and my supplement health plan would not cover treatment if I travelled to get it. Is that a thing? Have any of you heard of this? rybren would you go out-of-pocket for the treatment? Have you looked into it at all seriously yet? Do you know costs?

Let me know if you go rybren, maybe we can go together and get a package deal!

I'm dealing with (possibly small fiber) idiopathic poly neuropathy since late 2016. It started with feelings like I was stepping on a pebble(yet nothing was there) and quickly progressed into numbness, burning, pins and needles, worst on the bottoms of both feet. Quickly it progressed to about mid calf and stayed that way for several years, until now I feel burning sensations all the way up both my legs into my torso, and also most recently, in my hands. I also get occasional "bee sting" sensations, which can occur anywhere in my body. Most recently I have concerns about changes in my balance. Although I'm not limited, except for the days when it gets me depressed and I lack motivation, it is relentless, pure torture.

So I'm determined to find the cure! I'd love to know the cause, because that would help us to address the issue, but if I never find the cause, I definitely hope to come up with the way to help my nervous system settle down, and get the nerves to heal, regenerate, recover. The neurology field is derelict, IMHO, offering something so lame as "idiopathic" as some sort of explanation. My neuropathy journey began soon after starting statins. Coincidence? This is my chief suspect at the moment. I'm off statins now, but perhaps the damage was done? I just don't understand why our advanced western medicine cannot actually examine the nerve tissue, in the hope to see what is actually happening to the nerves, so as to come up with a legitimate Dx.

I had thought to get to Mayo a while back, thinking a multidisciplinary approach might help specialists to go beyond their very narrowly focused specialties. It sounds like many of you understand the "dead end", where a specialist finally determines, "Well it's not my area, I don't know what to suggest next". Then I came across something that said medicare and my supplement health plan would not cover treatment if I travelled to get it. Is that a thing? Have any of you heard of this? rybren would you go out-of-pocket for the treatment? Have you looked into it at all seriously yet? Do you know costs?

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!

I have been wondering the same thing. After 20 years, I don’t want to give up, however the pain seems to arrive earlier and earlier. I am about to “start” fresh again = after removing all pills, doctor prescribed and supplements for three months. There was no difference eliminating drugs from my daily routine , and my cholesterol was elevated without a statin. I truly was hoping the statin was the culprit. So, just started, statin, 1 metformin (although not diabetic) and magnesium oil spray at night, along with a magnesium glycinate supplement. I have just ordered an Alpha Lipoc supplement too. I think I should only add one at a time to determine if any relief from magnesium. I have only deteriorated the last four years, fighting the pain, the mobility issues, and mental depression. I appreciate this forum group and Foundation for Peripheral Neuropathy. I wish we had a support group in SW Florida, as Jacksonville is a 5-6 hour drive. I am going to contact our hospital neurology group and “start” again, and be open to suggestions that I have not tried. The chronic pain is mentally wearing me down… So question is what - should I try 1 supplement at a time? Add Alpha Lipoc now and what dosage should I start with?

Let me know if you go rybren, maybe we can go together and get a package deal!

I'm dealing with (possibly small fiber) idiopathic poly neuropathy since late 2016. It started with feelings like I was stepping on a pebble(yet nothing was there) and quickly progressed into numbness, burning, pins and needles, worst on the bottoms of both feet. Quickly it progressed to about mid calf and stayed that way for several years, until now I feel burning sensations all the way up both my legs into my torso, and also most recently, in my hands. I also get occasional "bee sting" sensations, which can occur anywhere in my body. Most recently I have concerns about changes in my balance. Although I'm not limited, except for the days when it gets me depressed and I lack motivation, it is relentless, pure torture.

So I'm determined to find the cure! I'd love to know the cause, because that would help us to address the issue, but if I never find the cause, I definitely hope to come up with the way to help my nervous system settle down, and get the nerves to heal, regenerate, recover. The neurology field is derelict, IMHO, offering something so lame as "idiopathic" as some sort of explanation. My neuropathy journey began soon after starting statins. Coincidence? This is my chief suspect at the moment. I'm off statins now, but perhaps the damage was done? I just don't understand why our advanced western medicine cannot actually examine the nerve tissue, in the hope to see what is actually happening to the nerves, so as to come up with a legitimate Dx.

I had thought to get to Mayo a while back, thinking a multidisciplinary approach might help specialists to go beyond their very narrowly focused specialties. It sounds like many of you understand the "dead end", where a specialist finally determines, "Well it's not my area, I don't know what to suggest next". Then I came across something that said medicare and my supplement health plan would not cover treatment if I travelled to get it. Is that a thing? Have any of you heard of this? rybren would you go out-of-pocket for the treatment? Have you looked into it at all seriously yet? Do you know costs?

@johnjp here is what I know. Mayo sets up time and date. They suggested I may be there 5-7 days. Not sure it would take this long but that depends on what additional test they would order. My insurance Medicare & Supplemental would be accepted at the MN location only. All travel cost is mine.
$’s aside I wonder if there really is anything else the medical community can do for this issue? I don’t believe so? But the landscape is vast and filled with snake oils. So any info is helpful.
Best to you