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Old 10-02-2019, 09:05 AM #3
Ctman Ctman is offline
Junior Member
 
Join Date: Aug 2019
Location: Connecticut
Posts: 21
5 yr Member
Ctman Ctman is offline
Junior Member
 
Join Date: Aug 2019
Location: Connecticut
Posts: 21
5 yr Member
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Quote:
Originally Posted by sdm11 View Post
Hi everyone, I'm new to the group. About a year ago, my feet started getting hot when I walked around a while. This progressed to the point where they get hot when I walk a lot or workout, or am in a hot room with shoes on, etc. Not too bad a symptom, and I've learned to live with it. Until recently, this was my only symptom. I had a negative EMG and got a QSART (negative) and skin biopsy. The biopsy was technically negative for SFN but very close to the margins, so my neurologist basically thinks I have very minor SFN. He's suggested starting on very low dose Gabapentin (100 mg at night) and progress to a still low does (300 mg at night) to see if it helps. I'm also on B complex, Alpha Lipoic Acid, Magnesium, Potassium, and Turmeric, along with a multi vitamin. Also trying out CBD oil. I don't have diabetes and the blood work came back normal. I've stopped alcohol. I have never been an alcoholic, but have been a fairly heavy drinker because I love and collect wine.

I recently had a new symptom that I think is related to the SFN, although not sure. Now, whenever I got hot (either from being out in the warm weather or working out) my back gets itchy and slightly painful pins and needles all over. It's really uncomfortable and very worrisome that the SFN is progressing. If this goes on, I won't be able to be outside in warm weather, which is scary for quality of life. Does anyone have these same symptoms???

I know there is a lot of frustration with general neurologists and how they deal with SFN on this board. Does anyone know of a great neurologist who specializes in SFN or at least PN and would be a real help to try to find causes or at least new and experimental treatments, rather than just prescribing drugs like Gabapentin? I have the resources to travel to the very best doctor if there is such a thing...the internet isn't much help in that respect.

Thanks everyone for your help!
HI SDM...I also considered myself a moderate drinker and non alcoholic. About six months ago I started experiencing tinging in my hands and feet. There were also some other symptoms but those were the main ones. Neurologist did an EMG and basically said I had "very mild polyneuropathy". All other tests are normal and I am in excellent health in every other way. The suspected cause is alcohol - doc says you can be a moderate drinker and still get PN from it. I tried to just cut back to only 1-2 drinks a week and started on the vitamin regimen detailed on this forum - there was very little improvement and perhaps slight progression in those first 6 months. I have now completely cut off alcohol for 2 1/2 weeks. I am going to stay dry (wine lover but alcoholic PN is progressive even if there is moderate drinking most that I have talked to and read agree). The Neurologists really are not helpful, so I have an appointment the end of this month at the Weill Cornell Peripheral Neuropathy center in NYC. I will document on this forum how that goes. Good luck!
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Joe Duffer (10-05-2019)
 

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