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anyone else have myoclonus ?
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anyone else have myoclonus ?

Just wondering has any one else got or had myoclonus ? Ive never spoken to anyone else that has ? thanks chris
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Avatar_n_tn
Hi.  Which type of myoclonus do you have?  There are many to choose from. I've had sleep myoclonus for years before I had any neuro symptoms and according to what I've read that form can be found in healthy folk but can be related to RLS, which I don't have.  My husband saysthat he knows I'm falling asleep because I kick him, sometimes I wake myself up with it.
Moeck
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215220_tn?1191460464
Hi crystaly. I have jerks. Started about a year ago. Has gotten progressivly worse. It's different feeling than the sleep jerks. It does happen mainly when I'm in bed but feels like I stuck my finger in a light socket. Huge electrical surge then my whole body jerks. I'm nowhere near sleep when it happens, afterwards it makes me tired and that's when I sleep. Sometimes it makes both my legs jerk or my arm goes flying up. My head will jerk to one side too. It's annoying for sure. What kind do you have?
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228463_tn?1216765121
Hi, I don't think I have met you before!  I have had a vibration in my whole body since May(along w/ numerous other Symptoms) and it gets worse around my menses.  I just had an EMG done and the doctor found the vibration and said they were "myoclonic discharges"  so he is referring me to a neuromuscular doctor for an evaluation to find out why.  I also have twitches everywhere but not as severe as when the whole episode started.

Do you have myoclonus?  I have read it is rather nonspecific and can be a sign of many different diseases.

Take care!
Kristin
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Avatar_f_tn
Hi everyone thank you for your replies I have action myoclonus which affects standing and walking . Rather peculiar to watch and definately horrible to have . Mine is mostly controlled by clonazepam ! Ive never actually spoken to anyone with but am sort of in limbo no dx other than neurological . Rather peculiar to describe its like a wave which I can feel coming of hmm electrical activity do any of you take meds for us ? x chris
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Avatar_m_tn
I have myoclonus for 2 years now and have no clue what is causeing it. i have had about every test imaginable and have slight abnormalities but nothing diagnostic. Mine started in my trunk and moved into my neck. They will bend me over and shake me before releasing and when they are in my neck it pulls my head completly sidways. Clonazepam did nothing for me neither did klonipin (klonopin) or lamictal. I am going to the Mayo clinic in November.
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714398_tn?1229669791
I went to the neuro a few weeks ago, and he said I either have RLS or Myoclonus. I don't think it is RLS because he has been giving me Requip XL for two weeks, and no change. I have been having muscle twitches since I was 11 or 12, but never bothered to have them checked out until these past few months, when they began to get a little worse
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Avatar_f_tn
I used to have myoclonus pretty bad.  It was my first "problem" and had all doctors very concerned for awhile.  Mine was called spinal myoclonus and was diagnosed at mayo clinic.  It would mainly happen when I was sitting or laying down, and was really bad if I laid on my left side, but sometimes would happen while I was standing and would make me fall down.  At first it jerked my whole body forward, then later it started jerking my neck back and to my left.  I still have some in my legs, and will occasionally have the whole body jerk, but not bad.  Stress and fatigue make it much, much worse.  

The doctors gave up on me after awhile because all tests (except the testing in the movement disorders clinic) came back negative.  Eventually the myoclonus got a lot better.  I had to quit my full time job and that helped a lot.  

I believe action myoclonus is harder to handle from what I've heard, so I sincerely hope you can get some answers.  SSRI's made mine really bad so if you are on any meds (besides the klonopin) you may want to look into that, too.  If you have any questions about my experience with it let me know.  Mine is a little different than yours, but when it happened to me I had never seen anyone else have what I had, and my doctors had never seen it either.  They would bring friends in to watch me jerk!  It was very frightening (I was 25 and just engaged).  So I'll be thinking of you.  If it helps, mine got so much better over time, and if you can try to keep from getting over-tired that helped me a lot.  I was also given a 5-day iv of solu-medrol, but would only consider that as a last result because there's no guarantee that it would help.  

Michelle.  
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338416_tn?1260996698
I've been having involuntary movements of the back, sometimes with my head jerking around too.  It was especially bad when I was sitting, although I had a couple standing up, too.  At first I thought it was seizures, but they were so localized that the neuro decided it was myoclonus of some sort.

I also have myoclonus of the legs, especially when I stand up.  I'll begin to stand up, and my whole body, especially my legs, tense up and force me to jerk into a bent position.  I also get it at night, when I'm asleep or just waking up.  My left leg will jerk rhythmically, or will extend and tense up.  I have to think consciously about getting it to relax.

[jets off for quick look at Google...]

Hey, I see here that patellar myoclonus is the jerking of the soft palate, which produces a clicking sound in the ear.  That's above the foramen magnum, according to Wiki, which means basically the base of your skull.  Anything above the base of your skull excludes spinal myoclonus.  I have that patellar myoclonus quite often, especially when symptomatic.  So my myoclonus has to be due to cortex or subcortex damage... right?
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338416_tn?1260996698
Palatal, not patellar!
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222135_tn?1236491821
I am on meds for myoclonus. Docs have never specified any particulat type, just myoclonus. Happens in most any muscle group - legs, arms, hands, glutes, you name it.

Penn
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Avatar_f_tn
I am 51 and have been experiencing terrible body jerking---dr. first thought was Huntington's.  Sister has MS; aunts have Parkinson's.  Have immense fatique, muscle tingling and weakness in legs; some visual trouble lately.  Will be evaluated soon at UVA.
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Avatar_m_tn
I feel so niave. I am not sure if what I have experienced is what you are talking about.

At times I will feel as if my whole body is charged with electricity. When that happens I know that I am more likely to have jerky movements. Besides the balance issue, this is why I use an electric wheelchair most of the time.

It usually happens when changing positions...instead of a nice smooth transfer, my arm or leg will kick out or sometimes my whole body jerks. I have kicked my wife several times while she is putting my feet into the the feet braces on the wheelcair.

It happens more if I get in a hurry, or are stressed or excited.

My wife will often say "slow and steady wins the race" to remind me to relax, I also have been taught breathing excercises by my OT.

Does this sound like any form of Myoclonus?.
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Avatar_n_tn
My wife has myoclonic jerks at night but they involve all muscle groups, legs, face torso, trunk, arms, etc. She would have one twitch after another continuously as she drifted into sleep.  It used to only present as she was falling asleep but two weeks ago it became more intense and lasted all through the night, making it very difficult if not impossible to even sleep. 5 days ago she had a tonic-clonic seizure. Docs at E.R. did ct scan, bloodwork, x-rays, no cause determined. We are currently awaiting results of eeg. can anyone offer ANY information??
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Avatar_m_tn
am 17 years old and i have action myoclonus,italk to my parents about it but they think that im trying to get attention.i get this weird involuntary muscle movement that starts on my leg and goes uo to my arm and it last for ten seconds or so,i dont really know what to do anymore
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Avatar_m_tn
My wife has had MS for 18 years. Her myoclonus did not begin until she STARTED on Requip. Go figure, she had a reaction to an RLS med. She had some minor muscle spasms in her legs before, but now she goes into full blown episodes similar to what others describe when the Requip starts wearing off. If she misses just one dosage, she starts having terrible jerking. We want to get her off of Requip, but it's like her body is addicted to it now. Miss one dose and pay the price! We are in the process of getting the situation resolved and we're trying to wean her down off the Requip. We hope to try some of the meds listed in this thread.
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1312898_tn?1314571733
I have Myoclonus.  There is a good info sheet on the NIH site.  I began having significant Myclonus 8 months ago that continues to increase.  I will sometimes have many per minute to only 2-3 times per hour.  It initially started in the evenings, now it can start when I first get up.  

The movements have been severe at times.

I think that it is a common symptoms in many neurological diseases such as MS.  

OK, I just realized that this thread is years old.    

Red
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1253197_tn?1331212710
Like Red I have noticed that this thread started in 2007, but if it has raised its head again it is no bad thing for us newbies.

I think that I have sleep myclonus nand am aware that often just when I am dropping off to sleep that my body jerks in different places and particularly my leg.  All the pieces of the MS puzzle slowly start to fit together...although I think there will always be a few missing as there is still too much to be researched and understood about this horrible condition.
I was going to use a stronger word then as horrible does not convey the right message but last time I did that the higher authorities bleeped them out. Lesson learned.

Sarah
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Avatar_n_tn
I have had all these symptoms for nearly two years.  
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Avatar_f_tn
I have myoclonic jerks in my upper torso, arms, shoulders, neck.  Sometimes it can get so violent and go on for so long that I'm weeping from fatigue. I get some relief from Clonazepam, which I take on an 'as needed' basis.

My myoclonus is due to MS, but I understand it can be caused by a variety of different things.
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1530566_tn?1316216807
My daughter has been having severe jerking in her right leg since Nov. 20th and has not stopped, the neurologist has put her on clonodine and xanaflex as well as tylenol3 for pain. she is now on iron pills as well even tho her count was at 33. The neurologist that we seen in the hospital said this is not myoclonus however the other 4 drs that we have seen all agree and say it is. her right leg only jerks when she is awake whether she be sitting laying down or even walking. I have her in physical therapy twice a week and they are saying that her muscles are staying contracted and that her pelvis is now tilted to the left. It was not this way. This is not the first time she has had this jerking in her right leg, she did this 16 months ago but it only lasted for 9 hours. this time it has been 30 days of non stop jerking when she is awake and is now effecting the way she walks. She is in alot of pain and doesnt want to do anything because of this...please help???
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Avatar_f_tn
I have spinal myoclonus and palatal myoclonus. I have had the spinal m. for 3 years and that palatal m. for 6/7 years. I have tried everything and been on different meds. I am so frustrated and feel so alone in this condition. I really want to connect with others who are also going through this. The palatal myoclonus causes constant ear popping and is horrible. It has gotten MUCH better over the years. Ironically when the spinal myoclonus is bad the palatal myoclonus is do-able and vica versa. At one point both were horrible. Currently my spinal myoclonus is ABSOLUTELY horrible. I am in constant pain. The spasms radiant out from my spine and create involuntary jerking and spasming movements in my entire neck, rt shoulder, right arm, my entire torso, my stomach and up and down my spine. It is EXTREMELY painful. I am finding this condition incredibly draining physically and mentally exhausting and would really appreciate some support. Thanks so much. How do you deal with these constant and blatant spasms and torso/arm/neck/head/shoulder etc movements in public? I am really having a hard time with this condition. My sweet 3 year old nephew saw me do this and was moving his body around to mirror me. I know he meant no harm- none at all- but it broke my heart that I have this damn condition. I am very thankful to find this post and this sight and I will support all of you the best that I can as well.
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398059_tn?1312888668
There was a plenty said above.  I will just add that I have many issues with myoclonic spasms.  Mirapex seems to solve most of the pain issues.  Extreme myoclonic jerks where the arms or legs sweep several feet seem better solved by reducing stress.

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704043_tn?1298060444
wow-- i didnt know i was so dumb!!-  i was reading this and well yes i have it, i jerk  bad.
i thought a ms thing  -guess it is. many times i thought i threw something out of place- well thanks 4 this post!    i learned something!!    tick
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Avatar_f_tn
I have myoclonic jerks in different parts of my body.  I tell my husband or friends, "I have "the jerks" today.  If I try to write a note, I can end up with  a terrible scratch mark across the paper when my hand jerks.  Mine isn't controlled because of all the other seizure medications I take for complex partial epilepsy, so we just joke about it.   You would think the epilepsy meds would control the myoclonus.
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338416_tn?1260996698
Hey, welcome to the forum!  I'm glad you found us.  Are you diagnosed with MS?  Or is the myoclonus from a different source?

Every once in a while I'll read a little bit about myoclonus.  I've been assuming that this was spinal myoclonus in my back, because of the building nature of the twisting jerks in my spine.  The legs tense up involuntarily when I move after being still for a while, so I thought that was action myoclonus.

Now I'm not sure that the legs are even having myoclonus - maybe it's something else.  It's weird, for sure.

Anyway, I found that there's a kind of myoclonus called reticular reflex myoclonus.  It causes myoclonus in parts of the body, like the legs, and it also causes palatal myoclonus.  It's caused by lesion formation in the brainstem.  I have two lesions, one in the pons and one in the medulla.  So I think it's entirely possible that that brainstem lesion is causing both problems.

I don't want to disseminate bad information, and it's very dangerous to read stuff online and think it applies to you!  

I see my neurologist in a month or so, so I plan on grilling her about the myoclonus and the leg thing.
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Avatar_m_tn
Hi,
My name is GG.
For two years now, I have had constant ear popping in both ears. I have had two bilateral ear surgeries to inject collagen to what they thought was a patulous eustachain tube, to which both surgeries didn't work, The poppIng remained the same as before as if nothing was done. Today, I was told I was being referred to a neurologist for Palatal Myocronus. The diagnosis seems to fit per the video that was taken of my mouth and the constant movements. Did you ever find relief from the popping? My popping in both ears is so intense, always always popping. The only time I don't hear the popping is when I sleep.
How do you cope with the popping? Some days I handle it better the others. I find the whole popping thing so draining at times.
Did you also get headaches, did they have you get an MRI?
It is nice to learn one is not entirely alone in this kind of stuff.
tHANKS, gg
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Avatar_n_tn
Hello,
I see most of these posts are quite old and hope that means everyone is well by now.
I have spinal myoclonus since six year ago when I had a bad cold. It has been no big problem until mid-may when I had food poisoning or some odd reaction to a mcdonald's chicken sandwch. I know that caused it because I was sick within an hour and that's all I ate. I was in the hosp on iv for 24 hours and, since that day, the myoclonus has gotten steadily worse. I finally will go back to Mayo in Oct. - it takes forever to get in there. From your posts, I don't expect much in the way of treatment or results. May try botox if there will do it. Neurontin did nothing when I tried it six years ago.
Luckily my pain is minimal but the whole condition is tiring.
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Avatar_f_tn
I was diagnosed recently with spinal myoclonus.   It took doctors 3 months to figure out what was going on and to believe that there was a problem.  

Mine was caused due to trauma to the spinal cord in a car accident.  Symptoms of the myoclonus didn't appear until 5 months after the accident.

I have taken bacopa, a natural supplement.  It somewhat calms the spasms, but not completely.

I have resorted to minimizing certain neck movements.  This means I use a music stand at work, a book holder on my desk, and sometimes wearing a neck brace helps stabilize the neck so that the spasms don't start.  I can't look down for long periods of time otherwise my jerks will start up.

I'm curious to know if anyone was diagnosed with spinal myoclonus after a car accident.
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Avatar_m_tn
I have severe myoclonic jerking too -- it causes my entire arm to *violently* jerk to the side uncontrollably, and snaps my head back so hard that I almost black out (and can actually give myself a concussion if I'm too close to something hard when it happens). Rarely, it can take a leg or such as well.
Diagnosed with one large lesion.
Neither Clonazepam nor the AEDs like Topamax or Keppra have had any effect at all, neither have muscle relaxants like baclofen or flexeril.

I recently had a three-day IV solu-medrol infusion which seemed to make it WORSE, and the Copaxone just burns but its only been two months so too soon to tell...
Anyone have any other suggestions?
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