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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Dec 8 11:43am | Replies (3052)

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@johnbishop

Hello @anya40, Welcome to Connect. I have small fiber peripheral neuropathy, degenerative arthritis, PMR (in remission now) and a few other conditions. I can understand why you might feel you may have been misdiagnosed. It's good that you are adovating for your health and learning as much as you can about the conditions. If it were me, I think I would want to discuss my thoughts with my primary care doctor and make sure they know the treatment they started you on is not helping. I also was started on gabapentin and stopped taking it but I talked with my doctor immediately after I stopped and we had a conference with her team of doctors about the treatment with gabapentin. When I told them I don't have the pain with my neuropathy and that I only have numbness, they told me gabapentin will do nothing to help with the numbness and agreed that I shouldn't be taking it. I shared my story in the Member Neuropathy Journey Stories: What's Yours? discussion here: https://connect.mayoclinic.org/comment/310341/

Here are a couple of websites that I've found helpful on learning more about neuropathy:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/newly-diagnosed/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

You might find the following site helpful if you want to plan the conversation with your doctor - https://www.patientrevolution.org/tools

Is discussing your thoughts about a possible misdiagnosis with your doctor something you might consider doing?

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Replies to "Hello @anya40, Welcome to Connect. I have small fiber peripheral neuropathy, degenerative arthritis, PMR (in remission..."

The site patient revolution.org/visit-tools HAS BEEN TAKEN DOWN.
You might as well delete from your post, totally useless.