body jerks?

hey guys
i dont even know what to call this but body jerks seemed the closest thing. a couple months or so ago i noticed that i will just be sitting or laying down, mostly sitting when this happens, but my whole body just kind of does a quick is not like a leg jerk or something similar as i have had these , and its not muscle spasms as i have had these before as well it doesnt feel anything like either one of these. Its just an involuntary quick jerk of my whole body, weird. doesnt last very long only a second or two. they are not painful just weird and confusing. i havent noticed having more than a few per day, some days not at all, but i think that whatever it is, it is becoming more frequent. HAS ANYONE ELSE HERE EXPERIENCED ANYTHING LIKE THIS, if so do you know what it is, or what causes it. replies would be greatly apreciated. THANKS

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good morning

i don't want to scare you but it sounds like you are possibly having seizures. google seizures and you will learn more. you can be conscience, not lose bodily fluids and still have a seizure.

when my daughter was young and she was walking and she just mis-stepped, that was her split second seizure. she would have several a day.

if you experience them today i would get to the er. having a few a day is not normal even though you don't think they are every day.

keep in touch

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i get this as well! it's like you are hooked up to a 220 line (not painful) just weird! for me the doctors said it was hemi dystonia. they are still trying to figure out what to do with me, so once i know i will let you know. just know that you are not alone!

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thanks for the input guys
Beautybarn-i am sure that i read your post a couple wks ago but did not relate to it as i had no idea what dystonia was. (i found it while searching the site after you answered my post)
please keep me/us in the loop with your future findings and treatments. I read a web page on this disorder and it sounds like a distinct posability, thank you. <if u have time could you send me info on your symptoms, how diagnosed w/ neuro-sarc, where you go for Treatment, or other things u think might be relavent?

what first started me on this sarc journey was that i had urinary problems for years that just would not clear up. after an COMPLETE work up at JOHN HOPKINS urology, they felt that it was neurological because everything was PHYSICALLY fine despite some abnormal findings on function tests. Urology DR SU put this together w/ findindings on X-ray of thoracic nodes and thought they could possibly be related by some multisystemic disease. The thoracic surgeon, Dr. Yang said so as well in his report( he had sarcoidosis circled!) even before biopsy that confirmed sarcoid granulomas.

For some reason, possibly they didnt find enough evidence from my MRIs and their jumper cable tests(ha-ha)I was never offically diagnosed w/ Neuro Sarc. contributing to my lack of a NS diagnosis also was the fact that i didnt have any other neuro symptoms at the time except for extreme pain and nausea.

This time however i am experiencing many symptoms that I did not have before. Several sites say they could be neuro related. Some of these make me think I do have neurological involvement. these include numbness, urinary problems, headaches( i never was one to ever have many headaches), psychiatric disturbances( panic attacks,anxiety, depression)weakness/lethargy, hoarse voice/trouble swallowing, mental confusion including horrible short term memory( my girlfriend can attest to this as she thinks i never listen to what she is saying!),excessive thirst, wierd facial feelings, insomnia, burning and prickly on bottom of feet, and nausea) i am considering trying to go to Cleveland Clinic but am a littly bit skeptical when i read posts that sound just like my story-such as one about (went to CC and now back to square one). i was told at Hopkins this time that my sarcoid was probably not active as well, but possibly i had another autoimmune disorder developing,

Gone natural thanks for your input as well- i dont think that what i am experiencing are seizures but i will bring this possability up w/ my doctors and see what they think. i hope you find some help i have read many of your posts and it seems you are just having a heck of time. Hang in there and send me a message if you need someone to talk to. peace

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my sarc jerks were being caused by my meds.

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kmb - I have all of the above too. I take Citalopram for the anxiety/depression/crazy/rage that took me over. It works great, though I have gained a lot of weight from it, but better than being crazy. My short-term memory is also very bad. My focus is very bad too; hard to stay on track, but I'm at the point that I have to laugh, 'cause otherwise I would cry. I also have those body jerks; don't pay much attention to them anymore. I try not to overdiagnose and over-obsess each and every symptom, which is what I use to do. Keeping busy helps. It's when I am stagnant that I notice every little thing going on. Now when my arm flies up in the air, I hardly notice. :)

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I was diagnosed in august 08 after battling with iritis and arthrtis .I was sent to a rhumatologist who discovered I had some weird muscle activity. The face drooping and neck spasms. So I was then sent for mri's which found sarc in my spine, lungs,and brain.

I was on massive doses of prednisone which i am sure you are familar with ,with not much sucess in the whole spine and walking
thing. After trying imuran and unable to keep it down my doctors sent me to cleveland clinic. Well they confirmed the neurosarcoidosis by the tests that were done in Ny.


I took all these records to the Cleveland Clinic and have been there since. I currently recieve remicade infusions, take 3mgs of prednisone and 20mg of arava. My veins all collapsed and I had to have an infusaport put in which was not bad but the first time accessing sucked! It felt like getting stuck with a fishing lure! I am told this will get better after time but I will need to ask Purple Snowflake about that one!

I see several doctors at the CC. Dr. Parambil, Karla , Dr. Tavee and Dr. Scott Cooper (whom I did not meet yet ! ) . Dr. Tavee confirmed the neuro part by all my previous tests! She also said I have a disease or syndrome not sure which called hemi dystonia. She video taped several episodes of muscle spasms. Talk about a freak show !!

As far as the Cleveland Clinic goes I HIGHLY recommened it , if you and your insurance can swing it! I have recieved excellent care there and had it not been for them I prob would not be as NY state does not know what they are doing with this disease!!!

Well I hope I answered all your questions and if you need anything else I am just a click away! God bless all my sarkie friends!! ~~~~~Barb

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I have that jerking on my right side only from my arm pit to my groin!! I've had all kinds of tests done but they tell me it's just stress. I don't buy that answer.

Mine occur when I am tired. When I sit and relax or at night when I'm about to fall asleep.

It doesn't happen all the time but it has gotten more intense the past few years. Mine only last a few seconds also.

You're not alone and above all not crazy!!

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you are so right about not dwelling on every little symptom that is going to have a negative impact on your overall outlook on life what i try to do is just keep them all written down so that when i see the doc i dont have to recall every little thing at that moment i am glad that you found something that works for you
beautybarn_ thanks for your reply when you mention your spasms, are they like a fast fluttering that you can actually see and then they stop after a few minutes? i think that i may have to go the Cleveland Clinic route myself. i have heard great things about them. i called my insurance company and the only doctor that is covered there is a Dr. O'Neal. i have a Rheum appt. on Oct 7, if i get another shoulder shrug i will probably make an appt there. also goofygoldens mentioned in her journal a neuro doc that has had alot of success w/ sarc patients, so maybe that is possability.
Beachbum- its funny w/ docs sometimes, its almost as if they disbelieve you until proven otherwise by test results. one question for docs would be do they really think we would go through all this crap(invasive tests, financial difficulties, travel, frustration) if we didnt have something seriously wrong w/ us other than just stress or depression.
Cande- i hope you can get your med issues resolved

again thank you guys untill next time, peace

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Hi Kmb,

I've had episodes of these body jerks too. Usually when I'm trying to get to sleep. I also get muscle spasms in parts of my muscles, you can see part of the muscle contracting while the rest of it is relaxed.

If I start getting these body jerks, I just take a diazepam and it seems to calm things down and enable me to get to sleep.


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