This is very horrible for you. We don't see posters here
with such dramatic damage.

Motor issues, have to be a nightmare. The fact that no one is responding yet, is that they are considering this as frightening.
I sure do.

If you have autoimmune issues, I wonder if you have been
offered plasmapharesis? And or IVIG?

Have you had other opinions? I think the severity of your
disease places it as a more severe and perhaps multicausal situation.

This link shows the tests needed, and potential treatment where IVIG is included.
http://neuromuscular.wustl.edu/antibody/pnimax.html
The first entry on the site sounds like what you have posted.

This has to be very hard to live with!