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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@johnbishop

@rhm601, Like you I also feel very fortunate that I don't have associated pain with my neuropathy. My Mayo neurologist diagnosed me with idiopathic small fiber neuropathy and offered no treatments for the associated numbness that I have. When I asked him, I was told the same thing my primary care doctors have told me for over 20 years of complaining about numbness in the feet and progressing up my legs. My primary care doc gave me gabapentin prior to seeing the neurologist to see if it would help. I stopped taking it after about 2 weeks because it wasn't helping. Then in a discussion with my Mayo care team I learned that neuropathy pain meds are generally seizure type medications designed to make the brain ignore the pain (my non medical translation of what the doctor told me).

I have been taking supplements since 2016 that have helped slow and possible have stopped the progression but it's subjective on my part as I have no interest in having more nerve conduction studies or skin punch biopsy tests done to see if it's gotten better. The first time I started looking into supplements was when I saw a list on the Foundation for Peripheral Neuropathy (page 5 & 6 of the document) -- https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf. I also used Google Scholar (https://scholar.google.com/) and PubMed (https://pubmed.ncbi.nlm.nih.gov/) when searching for information on studies about supplements that help with neuropathy.

I also have stayed away from CBD/THC products because like medications they are addressing pain and I haven't seen or heard (or I missed it) anyone saying they have helped with numbness.

@retired123 discussed a product called EB-N6 in a post in another discussion that may be something to investigate. Here is the post in the discussion - Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/comment/692162/

Has your neurologist or doctor mentioned any possible causes for your neuropathy diagnosis or do they say it's idiopathic like mine?

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Replies to "@rhm601, Like you I also feel very fortunate that I don't have associated pain with my..."

thanks!

I contacted @retired123

I think my neuropathy is idiopathic beyond the history I gave.