@ Tulip,
Could be a start. There are options for treatment, but its big bucks. Insurance issues are the dictators of our treatment it seems. I have more bloodwork ordered, some I think I've had already. Now I am getting all those rare antibody studies for Paraneoplastic Cerebellar Degeneration (which I know I don't have cause they said cancer and myeloma was ruled out) and are being tested because they are on the blood work list of things to do. If I had no insurance, they would not even be considered. It not that they want to make money, it just that it's a big teaching hospital and tests are a teaching tool.

I have a similar problem with cramping. It is much better than a year ago when I couldn't do much of anything without cramping up, no burning though. Now when I lift my right leg, I get the charley horse in my abdomen. My pain is intermitant electrical shocks down my right hip and leg, shocks and pain down the back of my legs. I have herniations in the neck and thorasic spine (waiting on the reports to be sent to me) which the neuro thinks has some mild pressure on my cord causing mild brisk reflexes. The twitching is all over from the shoulders down which my doc says is from spinal irritation of any kind, be testing, mechanical, whatever.

I too have a dreadful fear of having anything start up in my face and throat. I can understand how distressing this must be. I thought I saw something about a Bruxism neuropathy on the the list of what else can go wrong with PN, but I do not have the link saved. Really scarry. My prayers for you.