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

[eascusa]

Do you have a diagnosis for yours? This happening to me at night so bad I think I am having a seizure. I cant get to sleep because of it.

[ianto_jones]

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?

[mq1996]

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.

[mkh9111]

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.

[ggpopping]

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

[jensequitur]

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.