Anyone with Dystonia or Dystonic Spasms?

Question

Hi all. I am "suspected" MS at the moment, as the Doctors are still running tests, but I was wondering if anyone has had Dystonic Spasms or Dystonia. I have been in hospital all week trying to figure out this newest symptom and what is causing it to no avail. Was wondering if it could possibly be related to MS and if any of you have experienced this.

Lulu54 · Accepted Answer

A quick look at the literature tells me that 3.5-17% of people with MS have dystonia - that's a wide range but it is still recognized as a symptom.  If you have internet access while you are there in the hospital you might google 'multiple sclerosis and dystonia' and spend some time reading what's out there - Sorry, I can't give you specific links because much of it is on websites that offer similar forums to this one here at MH.

 One research paper shows evidence that dystonia can often be the first sign of MS and the doctors have their work cut out because there are so many other diseases that can also cause this problem.  I sure hope you get sprung from the hospital soon with some answers.

welcome to this forum,
Laura

Arinai · Answer

Well, MRI and MRA ruled out MS, so I don't know what is causing the Dystonia. It was in my left arm, right leg, and neck. They did find a Cerebral AVM, but that is not what is causing my problems at the moment. 

Thanks for the replies, everyone.

anon07072023 · Answer

My partner has cervical dystonia. I'm not for sure where your dystonia is located. Usually, it's in specific areas.  

Her neck muscles on both sides will spasm/tighten at the same time.  If you do have dystonia, you have to watch to not take Phenergan.  It can cause even more spasms. They gave her Phenargan in the hospital and it made her face and neck muscles go into visible quick spasms/jerks that they had to rush in and give her another injection to stop.

Lulu54 · Answer

I just glanced at your profile and see you play several instruments - one piece I found on Dystonia showed case studies and a woman who was able to relax the spasms by playing her flute - seems the mind likes creating music more than creating problems.