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Regional neuropathy centers?

Neuropathy | Last Active: Feb 25 12:30pm | Replies (11)

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@magnum52

I spent a week at Mayo in Rochester trying to find a cause for my idiopathic small fiber neuropathy. I had every blood test and other tests you could possibly imagine and they found nothing and recommended nothing except taking the useless drugs I was already taking. I spoke with an MD in pain management about a spinal cord stimulator but I already had 2 trials with no meaningful relief. The future is bleak when it comes to neuropathy treatment. A few weeks back the non-opioid drug Suzetrigine was approved for short term use for moderate to severe pain. I wrote my neurologist about getting a prescription just to see if it helps. The drug I have been Anxiously waiting on called Engensis that actually deals with the root problem of repairing damaged nerves should have already been out but it looks like the company that owns the drug may be having problems. Pirenzipine also should have been out by now but the company that owns it is having financial problems. My guess is that spinal cord stimulation may be our best hope. Most drugs in research deal with symptoms and not the problem of nerve demyelination. The future does not look as promo as it once did.

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Replies to "I spent a week at Mayo in Rochester trying to find a cause for my idiopathic..."

If nerve demyelination is truly your problem, find a doctor that will read the journal articles and prescribe what you need. It has been shown that the simple asthma drug, Theophyline, stimulates myelin growth in both the central and peripheral nervous systems! From 2020 in Nature Communications journal:
https://doi.org/10.1038/s41467-020-17243-z See page 5 bottom, left.