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Idiopathic Small Fiber Neuropathy Research

Neuropathy | Last Active: 3 days ago | Replies (141)

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@johnbishop

Hi Diane, Not much change in my numbness in the past 4 years but I do consider that a win since it's also not any worse. I do think the supplements I take help some but don't really make it go away which we all would like. I also think it's important to keep the skin hydrated with a good moisturizer. I like the LifeFlo magnesium lotion which seems to have a calming affect. The reason it's harder for me to tell if the numbness is any better is that I also have to wear 20-30 mmhg compression socks up over the calves and I always have that squeezing feeling on the feet and legs.

I've found it helps me walk a little better if I don't have the really cushy shoes that I used to love so much. I have some zero drop (flat) shoes that help me feel the ground a little better but if I have to walk any distance like to a Mayo appointment in downtown Rochester, I like a little cushion to make the walk easier.

I asked about Metanx at one point in time but was worried about the B6 content as a lot of research points to causing neuropathy (B6 toxicity) if the levels are too high. @ray666 started a discussion awhile back on EB-N5 which may be another option - https://connect.mayoclinic.org/discussion/eb-n5-and-idiopathic-pn-long-term-usage/.

I would keep asking questions and learning about any new treatments that may be available. It pays to advocate for ourselves. Hoping you find some answers! John

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Replies to "Hi Diane, Not much change in my numbness in the past 4 years but I do..."

Hi, Diane

John cited a post I'd left a long time back about EB-N5. I might add asa brief footnote that as of today I have been using EB-N5 for nearly two years (wth my neurologist's blessing). My large-fiber PN (poor balance, but no pain) hasn't worsened in all that time (confirmed a short while ago by a second EMG). Is that thanks solely to EB-N5? I can't say. Something I'm doing seems to be serving me well and that pleases me.

I wish you success in your pursuit of good, lasting health!

Cheers!
Ray (@ray666)

John, thank you so much for the detailed answer! First, I'm looking into getting some of the lotion/moisturizer you use. Second, YES, I also am concerned about the B6 in Metanx and am going to question them about it and do some more research. I will keep you informed if anything new comes to light. All my best wishes,too, for more improvement for you--Cheers, Diane