Quote:
Originally Posted by Fran E
Just wondering - I know that most of the sensations I have are common - tingling feeling in toes/fingers, the feeling of bubbles or worms under my skin, the "spiders' running across my feet or scalp etc, but do other people get major body twitches and/or jerks - particularly at night when going to sleep? It's not like one of those semi-dreams where you dream you are tripping or falling off a sleep, but an entire limb or other body part flinging. I've had arms and legs fling, my head regularly bounces down to one side and then back up again, and some really weird ones like all 10 toes flexing backwards at the same time., my jaw slamming shut, both legs curling upwards at the same time, etc. These are all very violent movements - and they scare the pants off me every time I get them!
My dr says just plain old myoclonic jerks, but seeing as they started as the same time as all my other problems I doubt it...
I am idiopathic pn, mostly degenerative and some axonal - they think it's probably autoimmune - Sjogren's - but no official diagnosis. I would appreciate any feedback!
Thanks - in the meantime I'll just keep on twitching!  |
Hi
To start with I am not a doctor, and I do no mean to cause you more anxiety.
After an auto accident, I developed many of the jerks, etc. you are mentioning, I also noticed my neck slowing tilting to the side...in fact if i laid down on a flat surface and relaxed my neck it would slowly move itself to the right side. Well bottom line, in addition to PN (which begun two years after the above) I have cervical dystonia, aka torticollis. (I cant help but wonder if somehow these two problems are related..but the neuro's I have seen said "no"). The dystonia is caused by a problem in the basal ganglia...can be genetic (starts early), caused by some medications, idiopathic, and secondary to head trauma (accidents). So if you research this and it at all seems like what you may possibly have, you need to see a MDS (movement disorder specialist neurologist) not just a regular, or peripheral neuropathy neurologist. Many, many neurologists even are not familar with dystonia.
Good luck...hope you dont have it, pn is enough.
