Welcome to NeuroTalk Jerky!
I'm sorry for what you're going through. Have they tried any medication to calm the jerking? I'm thinking maybe anti-spasmodic meds like Topamax or something similar?
I don't have experience with that, but I have had migraines that would go on for weeks or even months at a time and I took Topamax for a long period and after I weaned off the headaches were gone.
I was amazed that they stopped but my MS neuro said something about it stopping the cycle (or something to that effect.)