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!

Go to the darker blue bar at the top of the screen and click on 'search', the fill in the blank box with 'Calcium VitaminD Magnesium' Mrs D and others have a LOT written about it under the vitamins and supplements forum nearer the top of the forums lists.

Keep in mind that if you have anything going on that's auto-immune [and I do too], that your body and how it's processing foods, drugs and everything else in the world is going to be different than normal. I and others have found the advice on Calc., D, & Mag quite useful in the coping process.

Gotta ask, by 'Your Dr.'? Is this a GP, Internal or some other specialist? If it's a neuro and he's NOT doing the testing right away, he's either lazy or careless.... Press for more tests[lists can be found in the 'Stickies' at the top of this forum, or go get a second opinion]. I got second AND third opinions which I firmly believe saved my life to a good extent...

Hope this helps and stop being scared! Learn as much as you can about what is or might be happening to you and become smart enuf to ask the right questions to get the right treatments. Docs, at least good ones, respect you more when you are asking those tough diagnostic questions ...just don't say I got it from "NT" or a support group.... I always cite Pub Med [Natl Medical Library] or NIH or Mayo or Hopkins etc.. and any really credible research articles/papers I can find [tho I mite find them from here?] Seems to carry weight w/those professionals and they then know you aren't a total pushover. With Sjogren's? You mite also want to find a good Rheumatologist as an alternative.

Soo go get those tests from whomever you can! Forget the 'IDIOPATHIC' thing/aspect...just get treated! Hope this helps & keep strong and have hope! - j

i get the muscle twitching during all periods of the day but the violent jerks of legs and arms at night. To a leeser extent during the day if i take a nap and sometimes when i am awake and out of bed. It can be quite disconcerting to wake up that way to say the least.

What you describe is way beyond the common jerks one gets
when falling asleep.

Some Myoclonus is central..that is in the brain.
Here is a link...I think you need a new doctor:

http://www.ninds.nih.gov/disorders/m..._myoclonus.htm

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.

Thanks _ i will look into it. It's interesting isn't it, when the dr's say there is no relationship between two symptoms that in your heart you know are related....

HI I was having violent jerks in my arms, shoulders and neck all day everyday for the last 2 years. It has been a nightmare. I just came upon an accupuncturist and am drinking Chinese med tea 2 times a day. For the first time in 2 years- and in 6 years for my palatal myoclonus- I am having some relief. The relief is not constant and it is hit or miss. I still get the spasms in my arms, shoulder, etc but not the intense forward punches and intense sideways arm punches that involuntarily happened constantly before. My advice is to REALLY research who you get the accupuncture from. The person I go to now puts the needles in my hand- in the thick muscle part near below the thumb, all up the inside of my calves starting at my foot and one needle in my chin. It is INCREDIBLY painful, but it is definitely worth it. I go two times a week. Good luck. Topsie