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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: Mar 12 2:12am | Replies (307)
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@lewin

I have SFN and burning feet and legs. I have erythmyealgia. If you look at Matk Davvis's page ay Mayo, they have connected it with faulty gene. They have also connected it with blood diisorders. It's all very scary and most doctors don't understand it.

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Replies to "I have SFN and burning feet and legs. I have erythmyealgia. If you look at Matk..."
emfm4me | @emfm4me | Mar 11 1:25pm

I had the gene testing done to see if I had the mutation on SCN9a, the gene associated with Erythromelalgia, but I was negative. The doctor thinks I had a genetic mutation, but unclear on what gene. Unfortunately this disorder is not well understood. The only medication I take for it is Mexilitine, which acts on the sodium channels associated with EM. I still have flares sometimes and need to exercise caution, but life is more normal. Hopefully, you find something that improves the quality of your life.

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