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Does Small Fiber Neuropathy always start in the feet?

Neuropathy | Last Active: Oct 19, 2022 | Replies (10)

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@sf2021

Mine started out only one side of my face. Then my arm, and lastly my my foot and leg in that progression. It was and still is predominantly one side of my body. I was tested for MS, and everything under the stars for two years. I live in NYC so I had access to supposedly top neurologists. At the end, they don’t know the underlying cause. I had the same question when they took the sample from my lower leg and thigh. The neurologist said taking the samples from these locations are the gold standard of this biopsy. Whatever that means. Now I’m just trying to manage the symptoms. Gabapentin and duloxetine help but there is never a day when I am without pain.

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Replies to "Mine started out only one side of my face. Then my arm, and lastly my my..."

My “progression” is almost exactly like yours - this odd tingling on my left side only and mostly hands/arms/shoulders/upper body so evenings in the FL humidity where every single dust particle or invisible flying insect is felt causing miserable evenings to enjoy on the porch. I’m not sure if it’s possible SFN or the AI disorders, but over the past year, I feel so uncoordinated as though my finger tips have lost all ability to grab small objects on the counter, button without frustration and removing the feminine liner from their packaging, I’m using my whole fingers to do this and not just fingertips. I do feel them in my legs, but only occasionally. I have noticed though when I first wake, my feet and toes have the “asleep” feeling for a long time before I feel like I can put them on the ground.

I’ve been on Pregabalin for months, upped the dose a couple of times, but doesn’t seem to make any difference. If you find surefire ways to make these “shocks” go away (without complete hippie/holistic/ultra clean diet change), I’m all ears! Best wishes to you in your quest for relief!