Going to bump this up . . .

I suffer from these as well. I had an MS specialist tell me she didn't know what these jerks were and had never seen them before. I knew then that she wasn't the doctor I wanted to see. My jerks seem to center around my spine. Since they are along my spine it makes my whole body just jerk. I am interested to know what can be done for this as well. So, I will be following this discussion!

I have Epilepsy caused by MS & "Myoclonic Jerks" (along with a number of different types of other seizure types, in my case) & my Neuro has me on 2 Epilepsy medications at the moment.

I tend to get what you describe & it may look like I'm throwing things, but It's just these seizure jerks caused by the MS that make me have these "Myoclonic" muscle spasms at times.

It can sometimes (rarely) be a very slight muscle jerk (either of it's own accord or on seizure medication making the symptom lesson or seizure meds. might even make the symptom go away...if you don't have multi-seizures, like I do, then you are just happy to just have the symptom reduced) but personally I've noticed that "Myoclonic Jerks" are less like the "MS muscle & hand tremors" symptom I still get where I jerk / tremor & spill my soup (for one example, which really sucks as well)...

"Myoclonic Jerks" are more of a symptom where before seizure medication I use to throw my soup across the room & into a wall cause the "Myoclonic jerks" were so forceful & they hurt too...now that only happens every once and awhile (when my body is "trigger-filled" & we all know what that means...watch out for health "triggers" & some times that can't be avoided, cause some times a "flare" is just a cycle your body goes through at times as well, unfortunately)

What happens more now that I'm on my Epilepsy meds. is I just spill my soup everywhere & drop things allot, fall over about half as much & black out about half as much...Which is a vast improvement...See, I have "Muliti-seizures", so, for me, just taking my seizures down to a bearable shout & working from there is a vast improvement (because my seizures are so many & so multi-dimensional...thanks MS) but, everyone is different regarding MS & Epilepsy & that's just my story.

If you just have the one Epilepsy symptom of the "Myoclonic Jerks" & nothing else (Epilepsy wise, regarding your MS) to contend with, that would be awesome & Epilepsy meds. can help control that pretty well.

Keep us posted on how you are doing my friend, cause this is quite a "fun" symptom to have to contend with...As if any of them are to begin with, you know?

As if any of this is a barrel of monkeys, right?...Well, if nothing else, I hope that little cutie in your Avatar pic. is giggling his butt off...laugh your arse off with him for awhile! :-)

Take care,
Stay sane!

If you guys bear with me I want to share a story about myoclonic spasms I am enduring. Not to take away from your story oleblue but maybe some of this will help you.

In January of this year I started having intense seizure like spasms in legs/hips AM and PM. I have found over time that it is presumed to be coming from scarring on the spinal cord from MS.

I have tried baclofen, klpnopin lots of meds. Only thing that suppress's it is narcotics. My old-time neurologist suggested 'tincture of opium". My spaticity doctor said how ancient is this doctor?

I went on you tube and saw a video on myclonic spasms of a teenager that looks exactly like the video of myself that I took to my Spasticity doctor.

I think we all are experiencing the same/similar thing due to MS.

I am desperate for a solution because I can't function in a drugged out state but grateful I at least found something that helps. Baclofen pump as been suggested. I said no. Now spinal cord stimulator has now been suggested.

For less intense spasms has baclofen or zanaflex been suggested to anyone? A spinal cord injury doctor ) physiatrist) is treating me for this but so far nothing has really worked

I'd really be interested to to hear from others dealing with this.

Thanks and good luck to all of us.

Melanie

Hmmmmm....... I have a significant lesion on my spine..... can't remember at what level, but it is a large lesion. I have an appt coming up with my neuro in a week and am definitely going to ask about this as it would concern me as well......... will post what I learn.

Oh my gosh! I finally found others that suffer from this too! It's been 5 months and I finally found a Doctor that figured it out and medicine that controls them (somewhat)....
Frustrating to say the least! They sometimes can be painful and dangerous to myself- My arms flail with such force sometimes that I hurt.
I am currently taking Neurontin and Trileptal together to control them. Its not perfect but better than they were!
What are you all taking?

I have these too. I take 10mg baclofen 3x daily and make sure I keep up with my calcium and magnesium.

I knew a man w/MS. He developed this problem. He took 2 mg. Valium 3X a day to control it.

Personally, I believe that Valium (which I take myself for spasms, etc.) is a very useful MS medication. Maybe you can try some of this?

I take 5 mg. up to 3X a day FYI.

Best of luck with this awful problem!

I also deal with this:O Mine are worse at night, my hands do the same thing, they pull in. I also get radical sleep jerks, these are not your typical sleep jerks. I'm surprised I don't wake up on the floor. I take Baclofen 3x daily, it did make a difference. I will also smoke a little cannabis, it works well for all kinds of symptoms. Keep us posted & try to look at it from a comical point of view. Some will say MS is nothing to laugh at but it has helped me & my family deal with this stupid disease.
Hugs,
Tammy

Hi,

I am happy to see this subject. Thank you to Lila for bumping it up! I just wrote about this exact thing the other day. , my first post was devoted to"jerky body parts"--I really did not know what to call it. Yes my hand jerks and it really irritates me when I'm writing.

Then the SECOND time I wrote about this problem was just a few days ago. I was so scared, my post name even said something on it about me being scared...but if we all took a vote here on this board I betcha I would be voted Drama Queen!! ;-) ....so anyway it was a slow day so there were no knights with fast fingers coming to my rescue!! LOL!!!

That day was a horrid day! If my husband was not such a cheap dude I am positive I would have fled to the ER. As a matter of fact a few friends did suggest the ER. Anyway what happened is that I was laying down and I was very awake. I noticed that my tremors in my hands were getting super bad. That progressed quickly to the jerk movements and this time the jerk things went beyond the hand, arm, and shoulder ones I had. It was horrible!! Yes this one invoked my heart also...from the right side, like right at the edge of the far right side of my heart. any way this all happened at the same time, it was almost like an attack. Like two dogs attacking at the same time. I actually started crying.

Last night the same thing happened to my stomach. While I was walking right before going to bed. Like a squeezing feeling and then like my stomach flip flopped. Then it was over. No residual pain.

Of course I won't tell my doc bout it. He is very firm in his belief that cigarette smoking causes all my MS symptoms. MRI was good. Have not been to a neuro I guess cuz I'm afraid. Neuros scare me becuz they can be so mean...well the few I've met.

Sorry so long. I know I'm being selfish. I promise to work harder on it.

Friends,

Irish

Yes, I have this happen randomly every now and again.. my leg or foot just flies out real quick involuntarily. The twitches in my arms, legs and behind when I'm at rest really annoy the crap out of me too ! I notice them more when I'm stressed.. I hope you find a med that helps.. Like mentioned, valium help me ... with the twitches, small jerks and dizziness..

wow- yes- one time i was down-back spasums- hubby-gave me my pills-lol- well they went in my food- yes-its sooo frustratin!! i take phenobarbital- but was on mysolene- 4 times a day- i went to other due to costs- its same stuff- but mysolene -costs more till my spend down is paid- hope i helped!! hugs