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Worth visiting Mayo Clinic for evaluation of idiopathic neuropathy?
Neuropathy | Last Active: 44 minutes ago | Replies (23)Comment receiving replies
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?
Replies to "Let me know if you go rybren, maybe we can go together and get a package..."
@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
Hello @johnjp, I would like to add my welcome along with @hookedongolf2004, @patriciaschulz1950 and others. I idiopathic small fiber peripheral neuropathy and always wondered what the cause is. For me I think mine is possible related to the metabolic syndrome since I fit in the traits and have been labelled by all of my PCPs over the years as being pre-diabetic and not knowing what that really means health wise.
I too was told I need to go on statins but declined and decided to try and lower my cholesterol numbers with some lifestyle changes - eating healthier, exercising more, losing weight and cutting back on all of the sugar I was taking in. I only did this because I learned that statins indeed have a connection with neuropathy and I was already dealing with neuropathy and didn't want it to get worse. There are lots of research papers on the connection: https://scholar.google.com/scholar.
There are many different causes of neuropathy which I'm guessing is why it is so hard to pin down a cause for many of us. Neuropathy Commons has a good list if you want to learn more about the different causes - https://neuropathycommons.org/neuropathy/causes-neuropathy.
I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. Probably the best thing you can do is to continue learning as much as you can about the condition and the different treatments available that may provide some relief.
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@johnjp you sound just like me. If someone could just tell me the cause I think I could understand the intense pain, and as you mentioned the mental game. Sometimes the mental gets ahead of my pain and I just cry for days. Distractions and things I love are my saving grace…other days they just don’t work. This morning, the sun is rising and hitting me on my face. I will go for an early morning walk…love it, but will pay the price by the time I limp home. I wish you a better day and pray there is an answer for this awful condition.