caret icon Back to all discussions

Does anyone experience dystonia?

I am having problems with my legs and arms jerking and spasms periodically. Dr said was dystonia. Can anyone relate to this and how did you get relief?

  1. Thanks so much for submitting this question, Eunice! This sounds like a really difficult symptom to manage. While we wait for others to chime in, I thought I'd share an article with you about dystonia: This article does mention some treatment options, but we always recommend that you speak with your doctor before starting any new treatments. I hope this helps! - Chris, Team Member

    1. I experience both dystonia and myoclonus and what you are describing sounds more like myoclonus. Secondary myoclonus is a symptom of some neurological disorders such as PD. An arm or leg or even the whole body can "jump" or jerk. Healthy people can have myoclonus like right before they fall asleep they may jerk or even hiccups are a form of myoclonus.

      1. , I also experience secondary myoclonus from my Parkinson's. It usually starts in the afternoon, and is often accompanied by a vocalization, like a shout. For a long time I was mortified and embarrassed by the sometimes painful jerk and shout. Now, I have found that if I joke about it, it doesn't upset me , and I have even gotten to the point where I can laugh. (I realize that not everyone can laugh about such a miserable, uncontrollable thing.) My husband doesn't laugh when it happens, but now instead of his eyes welling up with tears, he will say something funny knowing that I will laugh, which takes my mind off of it. One of his funniest was him singing to the tune of "Monster Mash": "She does the twitch. She does the Parky Twitch..."

      2. Your ability to laugh at something that can be embarrassing is admirable. Courage certainly is an appropriate description as to how you are handling this issue. My previous comment got cut off.My neurologist prescribed 2 200mg of Magnesium Glycinate at bedtime and I am no longer experiencing the unexpected jerking that was my affecting sleep and startled my husband I also tend to make light of some symptoms and my husband and I try to laugh often even if it is self directed.

    2. Hi Eunice. Thanks for your question. Restless leg syndrome can be very common in people with Parkinson's. Please talk to your doctor about diagnosis and treatment options. Here is some additional information:

      Regards, Kelly, Team Member

      1. Hi Eunice, sometimes involuntary movement (dyskinesia) can be triggered by side-effects of our medications (I am not a doctor). Depending upon the medications that you are taking, you and your neurologist might discuss if your medication is the cause. I find keeping a journal and sharing it with your doctors is helpful to see if you can identify a pattern. This is not medical advice, it is just what has worked for me. Best of luck- Community Team Member

        Please read our rules before posting.