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Small Fiber Neuropathy biopsy test results

Neuropathy | Last Active: Feb 15 2:46pm | Replies (36)

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@issapi04

I am so glad I found this forum. I am a 34 male, always healthy and active at the gym. However , back in 2016 I had a brief electric shot like sensation on both cheeks while brushing my teeth, and slowly started to have strange sensations on my face, TMJ and headaches, but it was not until 2019 when I developed a sudden burning pain in both legs, both arms and in both side of the face, I lived a somehow normal with this pain, but in Oct 2023, I developed sudden autonomic symptoms (shortness of breath upon standing and exertion, tachycardia, dizziness, flushing, chest pain and weakness in legs upon standing and walking. My neurologist believe it is SFN with dysautinomia but my most recent skin biopsy came back normal, in fact, the nerve density on my calf has increased compared to my results in 2020. I have a history of exposure to medications that are known for impacting the peripheral nerves, but with two normal skin biopsies, I am so concerned that I might have to continue testing to hopefully get a diagnosis, this is tiring !

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Replies to "I am so glad I found this forum. I am a 34 male, always healthy and..."

Welcome @issapi04, The journey to get a diagnosis and a treatment that helps can be tiring to say the least. I don't think you are alone. There are many discussions and comments on autonomic neuropathy that you might want to scan through to learn what others have shared. You can find the discussions and comments using this search results link - https://connect.mayoclinic.org/search/discussions/?search=Autonomic+Neuropathy.

I think one of the best things you can do to help yourself is learn as much as you can about your condition and what treatments are available. You mentioned exposure to medications that are known for impacting the peripheral nerves. Are you still on the same medications?

I have been diagnosed with SFN and dysautonomia, and had a negative skin biopsy. I’m a patient at Mass General, which has a good neurology department. The neuromuscular specialist who ordered the test said that skin biopsies are good for confirming SFN, but not good at ruling it out: few false positives, but relatively many false negatives.

Only an expert could tell you the odds of having SFN given two negative test results, but it probably depends to some degree on who does the biopsy and who evaluates the sample. Mine was done by an expert (Anne Oaklander), but was sent to an outside lab for evaluation. In one of her talks, Oaklamder stressed the importance of having the biopsy evaluated by experts.

Hope that is at least a little helpful Best of luck