Dystonia of the trunk ...
 

Anyone here suffer this, if so

when did it come on,
how did it manifest itself,
how is it treated.

Neil .

I have a mild case of cervical dystonia. Neck and shoulder. did try botox injections...didn't help. Because of spine and nerve pain, have been taking meds that include vallium. I had not been able to lay on my left side in over 15 years because of the pain and swelling. Since taking the valliium...5mg's twice a day have been able to lay on that side with very little pain. Vallium is for anxiety; but also for muscle pain. I took muscle relaxants in the past...nothing helped; untill the vallium.

Not sure this is of much help to you, but thought I would mention this for whatever it's worth.


Gerry

I have had dystonia since before dx with pd, around nine years ago. It used to be occasional but is now more frequent. It has never been called anything other than dystonia, so I will describe it so you can tell if there are any similarities. It often happens when unmedicated, as in first thing in the morning or when meds have worn off, and it doesn't seem to be specific to any one organ. It feels more like a painful wave/spasm that moves up from my lower torso and ends in my neck. It is quite unlike any other pain I have ever had. It completely stops me in my tracks, and shows up on my face to others. It sort of rolls up the inside of me till it gets to my head and then stops. I get another dystonic thing that involves either one of my legs that also stops me in my tracks, it also rolls up the outside of my leg up my hip and to chest level, like a spasm, ending in my neck. These are not the only dystonias I get others are smaller, but they are the ones that affect my torso. They are shortlived, and being consistently medicated seems to reduce the frequency, but I am not that great at taking my meds on time.