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Hi Beth, I'm sorry you are afflicted with a horrible ailment. The midsection spasms are familiar to me. My movement disorder specialist suspects I have abdominal dystonia. The spasms can last for hours. If I am standing up, the muscles tighten, pulling my upper body forward, crushing the ribs and I can't get my breath. It feels like a boa constrictor is squeezing me. I will begin a new med this week. Austedo is the name of it. If that doesn't relieve the spasms,Botox is the Plan B.You are the first person I've "met" who has this. Do my descriptions sound familiar to you? I'm a 73 yr old lady who also has PD. I live in South Carolina.
Replies to "Hi Beth, I'm sorry you are afflicted with a horrible ailment. The midsection spasms are familiar..."
Hi Nancy, I was checking to see how you are doing. Did you start the new medication? Any relief?
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Hi Nancy, I'm sorry to hear of your difficulty with muscle spasms. It seems that the dystonia diagnosis is a somewhat catch-all diagnosis for otherwise unexplained muscle spasms. I am still hoping that the cause in my case can be determined although at this point the neurologist is running out of any further tests which is why he has suggested the Cleveland clinic. The spasms sometimes impact my entire body including my legs, arms. trunk, neck and jaw. These can last anywhere from a few minutes to an hour or more. I do get frightened when my breathing is impacted but it is usually brief. This is something that I will be discussing at my next appointment as a serious concern. I have heard of a similar description of the squeezing sensation from spasticity associated with MS. (my father has MS). Has MS been ruled out in your case?
I hope that the new medication brings you relief. Thank you for reaching out. 🙂
Beth