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I am in the same boat except not as severe (yet). My neuropathy started in May 2019 (all of a sudden), is in my feet only, and is numbness only - very numb but no pain (yet).

The word "idiopathic" drives me crazy. I am an engineer by training, and if a bridge fell down you would not say it was "idiopathic", you would find the cause. Yes, medicine is different, but they use the word as though it's an explanation, and it's not.

I have a virtual appointment with Dr. Anne Louise Oaklander at MGH in April. It took a while to get that. https://neuropathycommons.org/experts/anne-louise-oaklander-md-phd

I think she is quite an expert, so hoping.... will report back.

In meantime I am trying a keto diet to see if that helps. My blood sugar is within range but on the high end of normal, and some say that even slightly high sugar (and/or insulin levels) can cause neuropathy. It may actually be the insulin that is the problem, not the sugar (some need higher insulin levels to control sugar).

I am also suspect of the fact that I was put in a statin a year before my neuropathy started. I stopped the statin when neuropathy started (my cardiologist said I did not need it), but neuropathy has worsened, so not sure whether statin was a factor or not.

I have low B12 but have taken shots for that for years, and B12 blood tests are normal. I've taken B vitamins, alpha and R lipioc acid, magnesium, etc. Nothing works so far.

There is WAY too little research done in so many areas in medicine. If all the $$$ are taken up in cancer research and more serious things like that, then I get it, but man, we still know so little about so much.

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Replies to "I am in the same boat except not as severe (yet). My neuropathy started in May..."

I just want to express my sympathy. Just curious what your A1C is? Doctor at Hopkins feels that neuropathy can occur with A1C as low as 5,7 and the best way to reduce along w diet is exercise. Statins are overused and can cause neuropathy. Oaklander is an expert but care in most areas for researching cause is terrible. We are spending too much money on our defense budget and now is approaching a trillion = to next ten countries combined including Russia and China. Plus we are the only developed country in the world that has a for profit system leaving the development of drugs up to the drug companies. Didn't mean to get on my "soapbox" but our politicians are taking too much money from Big Pharma and their motive is profit. I hope Oaklander can shed light on what is going on.

A caution to avoid supplementing with vitamin B6. Excess vitamin B6 can cause neuropathy.

Blood serums for B12 are inaccurate after any supplementation. Consider trialing EOD shots. It helped me a great deal until I ended up on an antibiotic which seems to have derailed me. My blood was normal but then I was IF positive.