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Neuropathy | Last Active: May 5 3:07pm | Replies (85)
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Replies to "I’m trying to come to terms with my condition not being SFN. My symptoms are now..."
That’s amazing that your symptoms have improved. I can’t really speak for your doctor of course, but the symptoms you describe are all symptoms of small fiber (or in some cases large fiber) neuropathy.
My symptoms are the same; I very rarely had what I’d describe as pain, like “ouch” pain, but numbness, tingling, etc. are still considered variations of pain, and I have small fiber neuropathy.
I’m not sure if this would explain your doctor’s response at all but the first neurologist I saw said I was fine; it wasn’t until I saw the next neurologist who had experienced treating SFN that she diagnosed it. At the time I suspected some physicians just aren’t as familiar with this type of neuropathy because it’s usually a clinical diagnosis (no objective test because an EMG won’t catch it). I’ve been had a skin punch biopsy (the more common way to diagnose it), but my numbers were “low normal.” Even so, that test can miss 30% of cases (per my neurologist). So while there is no objective “proof” of the diagnosis, I still have the symptoms, and therefore the condition.
It took me a long time to accept this, and it’s a long story, but I have multiple other conditions that also are clinical diagnoses—made based on my symptoms and experience, but as of now, no test exists. It’s sadly common. And these are often the conditions that have no known cure.
I don’t know if that helps. But it sounds as though I have the same symptoms and I have SFN.