Hi everyone,
I’ve been getting these strange twitches that seem to start in my neck and make my head move,usually to the right . They started as really strong at night when I lie down to sleep then got less strong and happening in the evening while sitting watching TV etc. Now it happens any time I’m not physically active and sometimes affects my shoulders or left arm. I don’t think it’s visible to anyone else. It worries me because some days it happens a lot.
My ms nurse knows I got spasms in my legs at night but haven’t talked to her about these. I will be starting Copaxone soon (Avon ex didn’t suit) so do you think it will help?
Theresa
Sounds like a type of myoclonus. Just got over extremely powerful trunkal myoclonic jerks also throwing me violently about in bed and also less strongly when sitting but sometimes also when standing. Can definitely be associated with MS but also other causes
Hi Theresa
Sorry to hear that you are having to deal with this at the moment. As mrbobowen has indicated, myoclonus is a symptom, rather than a condition; hiccups is a classic example of a myoclonic jerk affecting the diaphragm.
As you have MS, it sounds very much like Dystonia, or rather Secondary Dystonia. Unfortunately, Secondary Dystonia is my over-riding MS symptom and reared its ugly head during my last relapse. At its worst, it was absolutely horrible. I was prescribed Tizanidine which was very effective. Baclofen is another effective medication which many sufferers swear by. Unfortunately, it didn’t work for me.
I still experience brief episodes now, although they are fairly mild. I would rather not revert to taking Tizanidine, until I really need to, so I take nothing.
The DMD, Copaxone will not have any effect on the actual dystonic symptoms. You need one of the medications prescribed especially for these dystonic MS symptoms ie Baclofen or Tizanidine. If these have no effect, there are muscle relaxants available of which Diazepam is one.
The following NHS website is very helpful :- Dystonia - NHS
Hope things improve soon
Best wishes
Tracyann xx