I am so sorry about your dystonia. Mine is upper back and arms. As you know it is a horrible disease. Mine feels exactly like what I would describe as an intense muscle "Charlie horse" that can last for an extended period of time. I did have problems with posturing, but since on Baclofen, I have been much better.
Most people have no idea what dystonia is and many health care workers don't what to do with it. At different times, I have taken combinations of Baclofen, Zanaflex, Robaxin, Klonopin and Botox injections attempting for control. I think the treatment plan at times is to throw as much as you can at it and see what sticks. Nothing gives me total control, the best I can hope for is about 80%. I also suffer from the type of spasticity normally associated with MS or CP.
I have a friend with cervical (neck) dystontia and unfortunately he is quite disfigured at times. It is ashame the way people stare and the comments they make. The botox injections and Zanaflex work best for him. Does your dystonia cause your head to be pulled down toward your shoulder?
Sorry I did not answer you sooner. I must have missed your question.
Well I am off to Emerald City to see if the Great and Wonderful Wizard of Oz will give me a new brain.
Rare neurodegenerative disease called “Multiple System Atrophy”. Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.