Question for you....

[Wobbly]

Hi again, it's been awhile and I know it seems like I only come on when I have a question, sorry I can't seem to respond to alot of posts.  I do watch your posts and would like to reply but find I'm not able at most of the time.  

I do have a question for people with MS, my left side is weaker and for the past few months, my Myoclonic type jerking with my left arm and sometimes leg is getting bad.  I have them daily now and they are so tiring.  It happens whenever I try to do something and once in awhile even when watching tv.  But usually when I talk or try to move around and do anything?    

I have my head movements as well, do other people have these type of symptoms?  what helps with them.  I can't get into see the Neuro for a few months and I was told to talk to my GP????  

any help would be really appreciated.... thank you
wobbly

[HVAC]

I have had what you describe for most of my life. I take zanflex because baclophen does not work on me.

Alex

[supermum_ms]

I started doing myoclonic jerks years before i knew anything about them or MS, and like a lot of other things happening, i thought it was totally normal to do sleep jerks when you were 100% awake but very relaxed laying flat eg meditating, in bed watching a boring movie etc. It was weirdly shocking but not a problem problem and it was only after I started experiencing similar jerks, when I was in the middle of doing some everyday activity's eg chopping veggies and suddenly the knife is flying across the kitchen, that this jerking thingy may not be as normal as i actually thought.    

As a habit I purposely ignore the minor things my body is doing but as I tried to make sense of this jerking business, i started to notice a pattern of consistency to what is happening to me. Before the jerking part, my muscles start to get tighter and tighter, i go into a freeze frame and when the muscle are hard and as tight as they can go, (it's the only warning I've worked out) the tension in the muscles are then suddenly released and i then do the violent jerk part.  

It's only happened a couple of times but if the phone coincidentally starts ringing directly after one of these jerks, the sound has actually triggered repeated jerks until the phone stops ringing - ultra weird and i think someone explained what that was all about but unfortunately I can't recall enough to provide details :(

Anyhoooooooooo, this has a good explanation of all the different types of jerks that you might find interesting......    

http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm

Cheers.............JJ

[Bubblebabe]

Candy, mine are like that too! As soon as I start to relax, laying down or sitting, I start jerking. I get these hard ones that come from my stomach, like my core, its like oomfph!! My head will snap real hard to the right, ear to shoulder like the zombies in Thriller, I need to get some yellow cat eye contacts and really freak out my kids!

Wobbly,
The jerking gets really tiresome. My back is messed up and everytime my right leg jerks it sends shooting pain into my back and down my sciatic nerve. So annoying.
I tried a few meds from my neuro and nothing helped. I even asked him for Topamax but he said it wouldn't help. Well one of my other docs, when I told him everything, put me on Topamax and in a week I had about a 70% reduction in the jerking. I'm sure it doesn't work for everyone but I just wanted to share my experience.

Good luck and I hope you feel better!

[Wobbly]

Hi, thanks for the reply, I will write things down to take to the GP now with the flu going around they don't want you going to clinic unless Emergency.  

It has settled down abit, I have taken a small amount of clonazapam which helps abit, but don't like taking it.  

Hope you feel better soon, if we ever make it to the Island we should get together.  My hubby's kids live there.  Dtr in Victoria and son in comix area


Take care and dance a lot, that's what I do lol
Wobbly

[candy158]

Hi Wobbly, so nice to see you.  Yes, I have those symptons too.  My left side has always been ok, but in the last couple of months, my ankle jerks, my whole leg, my fingers, my arm, but the oddest one I had the other night, and it actually woke me up, my stomach muscles spasmed, and I sat right up, ( actually it startled me awake) , but it felt like I had been exercising afterwards.  

My symptons seem to be worse in the evening when I am trying to relax, and then in my lazy type chair, with my feet up, we look like we are listening to music or something, cause I hopping all over the place LOL  ( trying to make you chuckle)

I hope your GP can help you, I do take 40mgs of Baclofen everyday, but I still get the breakthrough spasms, in my feet too, arches, and toes......

Gotta love this MS ....

Hope this helps,
write questions down on a piece of paper before you go to your GP, and that will help you to remember what to ask, just incase anxiety sets in .. OK??

((HUGS))
Nice to see you again,
Candy

[Wobbly]

I recently moved from city to small town,  my hubby retired and wanted smaller town, so getting to neuro isn't always easy, but I do have a GP here in town.  I will see the GP and see what he suggest, the Neuro only works part time too for this area, so I can't get in that fast, he also is on vacation for holiday season, no coverage.

But does anyone have these types of movement issues.  I wonder if it something else going on with me?

Thanks again
Wobbly

[kwarendorf]

Above post was meant for another thread...

[kwarendorf]

I suspect you're right DV. Given that MS is an off label use of Rituxan I think that there is a pretty wide range of protocols.

Kyle

[doublevision1]

I don't understand their response to you, to talk to your GP when you are having new problems due to your MS. I agree with PeninaD to ask your GP to intervene on your behalf.

[PeninaD]

Can your GP see you, and then have the GP contact your Neuro to get your appointment moved up as a more urgent case?

[HVAC]

you might be describing intention tremors. Probably muscle relaxants would help. You might need to try different ones if one has not worked. If they are bad enough they can insert a Baclofen pump into your spine. It uses less medication and is less sedating.

Alex