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Many neuropathy issues, so why so few doctors who know?

Neuropathy | Last Active: Apr 6 2:30pm | Replies (51)

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@ccchang
It's great how perseverant you are with trying different things. Since no providers are willing to step up to the plate, we have to take our own responsibilities to experiment. The largest disappointment for me was that my situation was caused by two surgeons. They made mistakes and then left it up to me to deal with it. I hear there are thousands+ people like you and me and many of them ended up where they are because of medical negligence. Good luck to you too and please post if you learn something new.

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Replies to "@ccchang It's great how perseverant you are with trying different things. Since no providers are willing..."

@pauldandurand

Thanks for the detailed list of exercises. I, too, use a sensory ball to massage my feet along with a wooden roller. My neuropathy is related to celiac disease which I believe was triggered after taking methylprednisolone and antibiotics for a sinus infection in winter 2024/25. Neuropathy began on second night of the cortisone taper and then it was time to see the neurologist who did EMG to diagnose PN. In July 2025 I had a test to see if I had celiac disease and it was positive. My neuropathy is due to that and I was managing really well--almost painless by following a strict gluten free diet. However, that changed this past December when a dermatologist did a shave biopsy on my shin. I am more than upset because there was no need to remove this lesion--it was benign and he told me has 40 years experience so couldn't he have known this. Now I am trying to heal and my neuropathy seems to have progressed. I am doing exercises at home and at pt, I get red light therapy and massage. I will be going for an ultrasound next week to see why the shave biopsy site is still causing me pain. Even my last visit to a doctor was so disappointing as I wanted to check my blood to see if minerals like iron, zinc and copper were being absorbed into my system as celiac disease can affect that but I was told it was not needed and that insurance might not pay. Yet, these docs nearly always offer gabapentin which does not have curative value. I have now returned to my concierge doctor who is the one who ordered the ultrasound. Like you said doctors make mistakes and we are left to deal with them. So it is up to us to do as much as we can for ourselves. Wish you the best!!