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Idiopathic Small Fiber Neuropathy Research

Neuropathy | Last Active: Mar 29 10:12am | Replies (141)
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@drdianeschneider

Dear John, I saw this old post of yours and, as I also have SFPN with numbness ONLY, I wondered if you have found anything that improves your condition since you posted last. One neurologist opined that "it's the flecainide" (which I only take as needed for an atrial fib episode, not daily). I also have a long history of ulcerative colitis, and certain research indicates maybe 30% of people with inflammatory bowel diseases get PN. I guess we have to say we are the "lucky ones" who don't have pain, but... it is still an uncomfortable and unpleasant condition. A podiatrist put me on Metanx (an algal oil) which I'm trying. Since no one talks about the "numbness only" type of PN, I am hoping you may have some news from the last 4 yrs since you wrote. Many thanks, John! Blesssings, Diane

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Replies to "Dear John, I saw this old post of yours and, as I also have SFPN with..."
John, Volunteer Mentor | @johnbishop | Mar 24 11:41am

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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