Sorry to hear your story...sounds miserable. I wish I had some great advice to pass on, but all I can tell you is what my first neurologist said to me (paraphrasing): "We have a long way to go with understanding how viruses impact our nervous system."

In my case, he had ruled out all the usual suspects and thought a virus might be responsible....Herpes Zoster, Epstein-Barr, etc... His only suggestion was to see what I would consider a "rogue" doctor friend of his who trying to treat patients with unusual neuro symptoms by prodding their immune system to respond. He couldn't provide details of how. This doctor didn't accept insurance and appointments were by cancellation only . And given he was 80 miles away to boot, I never took that path.

BTW, my symptoms started about three years after getting shingles at age 48.