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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: May 26 10:50am | Replies (6004)

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@johnbishop

Welcome @daimudan, We are happy you've found us!! There are a lot of different discussions in the Neuropathy group that you might find helpful. Here's the complete list of discussions -
https://connect.mayoclinic.org/group/neuropathy/.

Also, I thought I would share 2 of my favorite sites for learning more about neuropathy in case you haven't seen them:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Do you mind sharing a little more about your diagnosis and any treatments you've tried?

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Replies to "Welcome @daimudan, We are happy you've found us!! There are a lot of different discussions in..."

Sure! (short version) Following my initial J&J vaccine, I started having numb spots throughout my body. Fingertips, toes, belly, left leg. Eventually my left leg went dead. It felt like a prosthetic; like it wasn't mine. After 8 months of tests, tuling things out, and a nerve induction, I was told it was axonal polyneuropathy.

Numbness in the toes, bone crushing pain in the feet, typically after (even a short time) periods of rest or just getting up. Systemic body aches and stiffness. It was also found through labs that I had pretty bad B6 toxicity, so that hasn't been in the equation for over a year. Difficulty dealing with things that were seemingly simple before - a flight of stairs. A simple curb. Fell several times, three times ending with fractures.

PT did little to nothing for me (in Phx). Pregabaline and Tramadol helped take the edge off.

I was lucky enough, here in Tucson, to find a DPT who took the time to study my issues, talk to neurologist pals of his and work in my proprioception. We also do strength work. Pain is half of what it was a year ago. I'm always eager to learn more.