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Just Diagnosed with Small Fiber Neuropathy

Neuropathy | Last Active: Aug 12, 2024 | Replies (236)

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@phix16

Greetings….1st time poster. As we know, neuropathy and especially SFN, can be very complex with no one size fits all…..which brings me here. I started having some slight numbness in the balls of both feet in March, unfortunately it began within a couple days of a certain shot that’s popular these days. 🙁
It didn’t go away and progressed to some of the usual sensory type symptoms. Had all the blood work done and EMG, all normal. PCP believed A1C that got abnormally high in January may have caused it….I was never diagnosed diabetic but pre diabetic for a couple years, that has all been resolved now (5.3 A1C).

Skin punch biopsy was done in October and showed no fiber density loss but did mention the presence of “large axonal swellings” which pathologist said wasn't diagnostic but can be seen in some “early or very mild SFN”. I know that’s pretty technical but had anybody had those morphological changes noted? To further confuse things, my feet get cold a lot (actually cold to the touch) which supposedly when it’s neuropathy they are cold to me but not to the touch. Lastly, I often wake up in the morning with ZERO sensory symptoms in my feet….literally none. I am convinced something else is afoot (I’ll be here all night folks).

Any thoughts?

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Replies to "Greetings….1st time poster. As we know, neuropathy and especially SFN, can be very complex with no..."

Hello @phix16, Welcome to Connect. It can be frustrating not having a diagnosis when you know something is going on with your body. I have idiopathic small fiber peripheral neuropathy but only have the numbness which sounds similar to your symptoms and my feet seem to always be cold.

Here's some information I found about the axonal swelling that might shed a little light on the topic.
"Increased swelling ratio predicted the decrease in IENF density in patients with painful neuropathy. Its quantification could support earlier diagnosis of sensory axonopathy." --- Axonal swellings predict the degeneration of epidermal nerve fibers in painful neuropathies: https://n.neurology.org/content/61/5/631

One of the better sites I've found for learning more about neuropathy is Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Have you seen a neurologist or did your PCP do all of the testing?