National Jewish for SFN?

Posted by aaron_az @aaroncush, Jan 18, 2023

I stumbled upon this article today: https://www.ccjm.org/content/85/10/801 and this part describes me to a T: “ Random patterns suggest an immune cause

Symptoms may also have a non–length-dependent distribution that is asymmetric, patchy, intermittent, and migratory, and can involve the face, proximal limbs, and trunk. Symptoms may vary throughout the day, eg, starting with electric-shock sensations on one side of the face, followed by perineal numbness and then tingling in the arms lasting for a few minutes to several hours. While such patterns may be seen with diabetes and other common etiologies, they often suggest an underlying immune-mediated disorder such as Sjögren syndrome or sarcoidosis.”

The author is now at NJH and Mayo in Phx has not been helpful at all. Has anyone gone to NJH for SFN and have good results?

Interested in more discussions like this? Go to the Neuropathy Support Group.

aaron_az | @aaroncush | Jan 19, 2023

Well it is a bust anyway. Only seeing neuromuscular conditions. I give up.

John, Volunteer Mentor | @johnbishop | Jan 19, 2023

In reply to @aaroncush "Well it is a bust anyway. Only seeing neuromuscular conditions. I give up." + (show)

That's a bummer but I wouldn't give up. Have you done any research on supplements that help with neuropathy symptoms? The list of complementary and alternative treatments on the Foundation for Peripheral Neuropathy has a list of different supplements known to help with neuropathy - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

aaron_az | @aaroncush | Jan 19, 2023

John,
I take so many supplements for this - way more than just that list as my case appears to be immune/inflammation related so add every inflammation related supplement too. Every time the pain ratchets up I research more things to try but right now the pain is winning. Sad to know that I can get 100% pain relief for a short time with a dose of steroids but that supposedly isn’t clinically significant.

aaron_az | @aaroncush | Jan 19, 2023

@johnbishop attached is the mostly up to date list of things I take minus the latest which is Agmatine Sulfate @ 3000 mg across breakfast, lunch, and dinner. Some things like NAC and others have been removed over time. Bolded are the actual pills, indented and not bold are the ingredients when that matters. I take stuff 4 times a day... breakfast, lunch, dinner, and bedtime (night in the file) and that is marked.

Shared files

Current Supplements Jan 2023 (Current-Supplements-Jan-2023.pdf)