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Just Diagnosed with Small Fiber Neuropathy

Neuropathy | Last Active: Jul 4, 2023 | Replies (235)

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@johnbishop

Hello @jfouts1979, Welcome to Connect. You do have a right to appeal health insurance claim denials - https://www.healthcare.gov/appeal-insurance-company-decision/appeals/ It's good to hear the IVIG did provide some relief for you.

Are you able to share a little more about your diagnosis and your symptoms?

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Replies to "Hello @jfouts1979, Welcome to Connect. You do have a right to appeal health insurance claim denials..."

At work but sure - I have cryptogenic/idiopathic small fiber polyneuropathy (non-length-dependent) verified via skin punch biopsy. I have Cramp Fasciculation Syndrome and Erythromelalgia. I also have Grave's Disease (but post radioactive iodine treatment). I've had SFN for 11 years. 11 freaking burning years of pain. I feel like I am burning alive constantly. I've tried pretty much everything at this point in time. The only thing left is Ketamine. I'd like to try WST-057 by Win-San-Tor (which is essentially Pirenzepine in topical cream format at 4%) - but it is not available in the United States except via the FDA Expanded Drug Access Program. So if your doctor will fill out a form for you - you can get it - and it has been shown to reverse small fiber neuropathy. There is also ARA-290 which is called Cibenetide - a peptide that is injectable that has also been shown to reverse small fiber neuropathy. Araim Pharmaceuticals however was unable to secure the necessary FDA funding to bring that medication to market. Oh yeah - back to me - I have GERD, Ocular Rosacea, Fibromyalgia, and a few other things. Low Copper.....Low Ferritin....Low Vitamin D....despite supplementation. Gluten sensitivity - gluten free since 2015.