Hi there- In the beginning of your post, you mentioned “small nerve muscle biopsy,” but when you quoted the NP about ordering a kit, it sounds like she was referring to what’s known as a skin punch biopsy. Do you know which biopsy they were recommending?

If your primary symptoms are small fiber sensory neuropathy, then it’s likely you’d need a skin punch biopsy. They take a small sample usually from two points on the most affected limb and count the small nerve fibers. It’s an outpatient procedure, but most clinics take the sample and then have it sent to an outside lab that processes it because not every hospital can process those samples, hence the need for a “kit” and provider trained to take the sample.

This also doesn’t necessarily tell you the type (meaning the cause) of neuropathy you have—mine was a long time ago but they counted the sensory nerves and nerves or glands that had to do with sweating (which is also involved with small fiber nerves).

I was told it can confirm small fiber neuropathy but it can also miss at least 30% of cases (per my neurologist). In my experience, the reason they say it won’t affect the treatment is because if they ruled out all other treatable causes of your SFN (B12 deficiency, excessive B6, current exposure to a chemical, etc.), the treatment remains the same. So some providers don’t even recommend or offer a skin punch biopsy because it may or may not help with diagnosis and it’s not always an option (you need a provider trained to take the sample).

I’m not familiar with the Pittsburgh area, but you’d want to look for a neuromuscular neurologist, usually. To be honest, I didn’t get much help from my neurologist except for diagnosis. Usually their role is to rule out other conditions and see if they can identify a cause of the SFN. If they can’t, then they go to managing symptoms: gabapentin or Lyrica, lidocaine patches, capsaicin or menthol cream, Cymbalta, I’m guessing you’ve heard the schpeel by now.

Definitely pursue further consultations if you don’t feel satisfied with the workup because if they are able to identify a treatable root cause (i.e. B12 deficiency) that’s meaningful. But if not, it goes to symptom management, which I completely recognize can be frustrating. But I personally wouldn’t count on a neurologist for assistance with symptoms management; it’s not usually the box they work in, whether it’s right or wrong.

There are a lot of active discussion here where others have shared what’s worked for them.

Personally for me, PT geared toward pain neuroscience, graded motor imagery (especially using the app Recognise for my lower limbs), topical peppermint oil, and a pain neuroscience treatment like the one used in the app Curable (just as an example—they also have a lot of free pain education resources), comfortable and well-fitting socks (Bombas brand) and shoes, and gentle yoga, is what helped me. But…everyone is different. And I’m afraid of gabapentin and Lyrica so I had to consider other things.

Pretty much none of those recommendations came from a neurologist, except I did have one who was great, but she relocated.