Hi, I am idiopathic pn for 2.5 years. One of my symptoms that is getting worse is what I call brain shudders or brain tremors. They come on when I am trying to sleep or rest. It is inside my brain - feels like I am tremoring inside my head. This is often followed by a major twitch - often my head will suddenly fling to one side, or both my shoulders will quickly shrug up toward my head, or all 10 toes will bend. this is usually bilateral meaning whatever happens on one side of the body happens on the other as well at the same time. these "twitches" or whatever they are, are intense and sudden. They come in waves, meaning a number of them occur right after each other, and last for a period of times - days, weeks - and then stop again.
I have discussed with two neurologists. One said she thought they were benign, the other said it might be indicative of metabolic involvement.
I have had every test known to man (spinal tap, MRI, muscle biopsy, nerve biopsy, lip biopsy, etc etc) and no diagnosis (except PN - demyelinating polyneuropathy with inflammation and some axonal involvement...)

Does anyone else have a symptom like this? If so, has it ever been explained? Thanks. My nights are very restless and I am left very tired when I am going through this (which doesn't make working full time and having 2 little kids any easier!!!!)