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Worth visiting Mayo Clinic for evaluation of idiopathic neuropathy?

Posted by rybren @rybren, 17 hours ago

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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John, Volunteer Mentor | @johnbishop | 16 hours ago

@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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rybren | @rybren | 14 hours ago
In reply to @johnbishop "@rybren, I was diagnosed with idiopathic small fiber peripheral neuropathy at Rochester Mayo back in 2016..." + (show)
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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@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

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John, Volunteer Mentor | @johnbishop | 12 hours ago
In reply to @rybren "@johnbishop thanks for your caring response. Diagnosed 4 years ago after all the testing and diagnostic..." + (show)
Profile picture for rybren @rybren

@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

Jump to this post

@rybren I'm glad you found Connect. There are a lot of proactive members here that are in the same boat and looking for relief for their neuropathy symptoms. Not sure if you have seen the Foundation for Peripheral Neuropathy website but it has been really helpful for me and others. They also have a YouTube channel where they have all of their previous webinars on various neuropathy topics that may be helpful for learning more. Here are the links if you want to check them out.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- FPN YouTube Channel: https://www.youtube.com/@foundationforperipheralneu4122

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