I just got around to reading this. I get dystonia everytime i'm off. Sinemet, or getting 'on' is the only relief. Each morning is a race of hoping the med kicks in before the dystonia does. If i wait too long to take meds, and go off, depending on when I ate my last meal, i can truly suffer wiith dystonia waiting to get back on.

Mine is in the shoulders,neck, and back - the side not as badly affected with PD is the worst with dystonia. It's the worst of the symptoms IMO. I have already had TMJ, a disc replacement in my neck, and have a bad back from dystonia at least in part.

paula