← Return to role of ongoing medical testing for idiopathic peripheral neuropathy

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Profile picture for jeffrapp @jeffrapp

I have had idiopathic PN for about 10 years. I am 81. In the beginning I had the entire gamut of tests, including a positive skin biopsy. A few years later, my University neurologist contacted me to suggest a battery of new tests only offered by select institutions. They were all negative.
Personally, I don't really see the need for follow up. Unless there is a new treatment (unlikely in my lifetime) anything done will just be a confirmation of what I already know, perhaps with a little more information. Standard advice is to be seen periodically if the condition is progressing (mine is), particularly if a purely sensory condition is developing autonomic symptoms (I think mine is). Unfortunately, even with these new symptoms, there's still no treatment other than supportive (PT, devices like walkers, etc.). If these become necessary, then follow up is needed.
For me, it doesn't feel worth the time and energy, but opinions certainly vary. This is a particularly weird disease.

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Replies to "I have had idiopathic PN for about 10 years. I am 81. In the beginning I..."

@jeffrapp

Your characterization of PN being a "weird disease" is spot on. My neuropathy, according to my neurologist is related to celiac disease for which I tested positive this past July. I have been on strict gluten free diet since then. Until a shin shave biopsy (which I did not need as lesion was not cancerous) I was doing okay. Now I have chronic shin pain and recent ultrasound showed no abnormalities. I recently had dental work done and I am ultrasensitive to that too. I have been doing PT but 90 minute sessions are too much. I know my PN has gone above my feet to shin but it is very intermittent. I wish you peace of mind--that is very important in dealing with conditions like this.