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← Return to biopsy for small nerve fiber
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What you say is true. However, it is only a presumptive diagnosis, based on symptoms and the results of the tests you mention. The biopsy is the gold standard.
Even though I am generally strongly against tests which give you no additional useful information nor additional treatment options, I did have this test. For some reason. I was comforted by the fact that the test directly confirmed that I had a "physical disorder" (less peripheral nerves). Unfortunately, it is also less treatable, even to the extent that most treatments for peripheral neuropathy are usually FDA approved for diabetic neuropathy. New drugs and treatments generally are first FDA approved for diabetic forms. That means insurance generally won't pay for them, although they can be prescribed off label if you're willing to pay for them.
Replies to "What you say is true. However, it is only a presumptive diagnosis, based on symptoms and..."
That is true, but for a “gold standard” test, it has a very high margin of error so even for someone who has symptoms and a negative skin punch biopsy, it doesn’t necessarily change the diagnosis. It also doesn’t identify the cause. A negative EMG/NCS for me in the presence of sensory symptoms…still gave me a small fiber neuropathy diagnosis.
I did the biopsy because I was hoping for more certainty since otherwise small fiber sensory neuropathy is a clinical diagnosis (no objective test to “prove” it). Even if it was positive it would have been for my own peace of mind, sort of.
For my biopsy, one sample was “low normal” and the other was inconclusive because the sample didn’t have enough of whatever it is they need to count 🤷🏻♀️.
So…I walked away with two tiny scars (tiny, but I am darker skinned so have a tendency for more scarring), what was categorized as a negative test for small fiber neuropathy that didn’t rule it out, and the same diagnosis I started with, with the same treatment options I had before I did the biopsy.
Like with anything, there are pros and cons to weigh. For me it didn’t change anything when really what I wanted was treatment. I think sometimes doctors don’t explain the nuances well or put more emphasis on diagnoses but not treatment, especially for chronic conditions.
It’s noninvasive, usually covered by insurance, and not painful though, so it’s relatively low risk.
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My neurologist also did extensive lab work and 1 important thing was B6 toxicity. So I am not longer taking it. I am also taking Nortripyline. After about 4 weeks I noticed my pain lessening. I have been on 50 mg for 2 months and the pain and burning is almost gone. The only problem still is wearing shoes for more than a couple of hours.