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millis (@millis)

Frustrated, could I have Small Fiber Neuropathy?

Neuropathy | Last Active: Jun 3, 2021 | Replies (10)

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The permanent numbness is my upper thighs, abdomen, left shoulder and upper arm and parts of my face, around my eyes, forehead, jawbone. My back is where I experience the most pins and needles, especially after a hot shower or when exercising. I do sometimes have burning like pain, but mostly it's just pins and needles. I have had two c-sections and a thyroidectomy, so the numbness in my abdomen may be related to scarring. I had an EMG that came back normal, and MRI's without contrast of my full spine and head. I work with a toddler with autism, so I am not sitting for very long and have no problems with movement. Full motion and no pain or problems lifting my arms. The only medication I take is levothyroxine and I've taken that for 30 years so I do not think it's any type of reaction to that. I did have cardiomyopathy after the birth of my daughter 14 years ago, but no one seems to think it could be heart related. My PCP is retiring and I get the sense that she's checked out, she just refers me to the neurologist when I point out that I am still experiencing this numbness The neurologist is someone I've never met in person and he is not….good. I have a phone consult with him coming up and I'm debating whether or not I should ask for a skin biopsy to test for SFN before I speak to him. Once I find a new PCP I'm hoping they can refer me to a different neurologist.

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Replies to "The permanent numbness is my upper thighs, abdomen, left shoulder and upper arm and parts of..."

@millis Your SFN could actually be from being hypo when was the last time you saw and endocrinologist and had a thyroid panel NOT just TSH?

Im thyroid-less and I have been seeing a neurologist and was also recently told I have small fiber neuropathy (my skin burns) its like having a sunburn without the burn absolutely horrible it effects my entire body but my most troubled areas are the tops of my feet and hands (not diabetic) I obsessed over that and recently started developing a numb feeling in my tongue and my toes. I do regret my thyroidectomy every day as my health has disintegrated over the past 4 years and can’t get real medical help because my thyroid labs are ridiculously low in their levels all of them so according to my Endo im good! Thats why I can’t wear socks, shoes, gloves and wear pants and shirt to bed to keep my skin from touching and rubbing on my sheets when I move … but Im good!! Agh.

Peripheral neuropathy is a condition resulting from the deterioration of the peripheral (most distant from the center) nerves. Your symptoms mostly sound like they are related to the more central nerves.
The skin test is usually done on the top of the foot, which are the most distant nerves of all, and is the part usually (not always) affected first. I'm not sure if skin tests of more central areas are even done. You are not describing any symptoms of the feet or hands, where PN usually manifests.
The best thing would be to start fresh with a new neurologist that you like, and let him/her proceed with the workup in the usual order, without too much of you managing the workup with suggestions, etc. Skin testing is usually one of the last tests done.