@ray666 thank you Ray for your kind wishes!

One more thought. I think one of the reasons two people with what seems to be the same diagnosis may have quite different symptoms might be due to the cause, and also to other underlying conditions. Plus we’re all different, right? After doing all the usual investigations as to the cause of mine, it was classified as idiopathic, meaning of course 🤷‍♀️.

That said, when I first became extremely ill 40 years ago with an Epstein Barr Virus infection that turned into Chronic Fatigue Syndrome, I was bedridden for the first several years and have remained disabled ever since. The virus attacked and caused damage to my nervous system from the very first day. I was healthy as a horse the day before I got sick. I’ve had vibrationing sensations in my legs (and many other symptoms) ever since then to some degree. But over the last 20 years the numbness, tinnitus, balance problems gradually set in and progressed.

My neurologist believes the initial EBV infection triggered an autoimmune response resulting in ME/CFS and later the advancement of the PN. A lot of that is speculation but it’s based on a lot of good research opinions.

All that to say, I don’t think you should worry that yours will necessarily follow the same course because mine really began 40 years ago with a virus. Plus I have 2 autoimmune conditions, and autoimmunity runs in my family.

And yet, we both seem to have the “same” diagnosis. I think there’s just so much they really just don’t know yet about PN and it’s many different causes and forms.

Wishing you all the best as well!
Suz