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

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Profile picture for John, Volunteer Mentor @johnbishop

@rybren, I was diagnosed with idiopathic small fiber peripheral neuropathy at Rochester Mayo back in 2016 after many years of watching the numbness go from my toes into my legs before deciding I wanted to get a diagnosis. I only have numbness and some tingling so what all of my doctors told me over the years turned out to be the same thing the neurologist told me after running some tests and a physical exam - there are no medications that help with the numbness. That's what brought me to Connect to learn more about the condition and possible treatments that might provide some relief. I shared my neuropathy journey story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

It sounds like the Gabapentin is providing some relief for your symptoms but you are wanting more answers. If I had it to do over again, I would probably go again but I'm local to Rochester so it's a short drive for me and doesn't require a hotel. If you already have a diagnosis and just are looking for a different treatment, I'm not sure the outcome would be much different...but then I'm not a doctor and have no medical background or experience.

How long have you had the neuropathy symptoms before you were diagnosed? Have the doctors suggested any other treatments?

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Replies to "@rybren, I was diagnosed with idiopathic small fiber peripheral neuropathy at Rochester Mayo back in 2016..."

@johnbishop thanks for your caring response. Diagnosed 4 years ago after all the testing and diagnostic work ups. Just not good at doing nothing so like you I joined this group which is very helpful. I just wonder if it is a
waste of time going to see the Dr’s for something they can’t help. Would prefer, like everyone to not at least give up. Not a fan of long term Gabapentin but it does help. Thanks