anyone else have myoclonus ?

[crystaly]

Just wondering has any one else got or had myoclonus ? Ive never spoken to anyone else that has ? thanks chris

[moeck]

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

[ncowleyc]

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?

[floridamom2]

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

[crystaly]

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

[tanda156]

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 or lamictal. I am going to the Mayo clinic in November.

[Buffheart]

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

[Sandpuff]

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.  

[jensequitur]

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?

[jensequitur]

Palatal, not patellar!

[pennst8r]

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

[vanvechten]

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.

[frustrated253]

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?.

[The1True1Archangel1]

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??