Hello, everyone. I have had dystonia since the spring 2013. Was not treated until July 2013. Now, my doctors are some of the best in the country. I am only 60 years old. I am new to dystonia, but I have never had a doctor tell me "all we can do is make you comfortable.". I have never dealt with which something I cannot win. I am already declared disabled. I am having a hard time dealing with this mess.

Grace

Hello Grace,
I also have the Dystonia that you have. Happy to email with you. Mine is due to late stage RSD, You? I am sorry that you developed this. I hear that some comment...sort of like there is nothing anyone can do but make you comfortable. They can be really frightening. I am here for you. We must enjoy all we can, right, Grace. We share like age as well.
All the best ,Jaydenkiley

Grace,
Are you in the midest of the ice storms? Yikes, it looks bad.
Jaydenkiley

Hi Grace~ This is my first time looking at this website, and yours was the first comment. Can I ask what types of symptoms you are having? I first had symptoms of cervical dystonia in Jan. of 2013, and was diagnoseed in April 2013. I have a variety of uncontrollable movements in my neck-- it never stops moving, except when I'm asleep. It moves in a couple different directions, sometimes slight, sometimes forceful pullings, sometimes a quivering sensation in at the base of my skull. All movements are very strong, and I can feel my muscles tightening. I too am having trouble adjusting, as I'm always extremely uncomfortable and self-conscious. I'm interested in finding the root cause of this terrible condition. Has anything helped you? Good luck.

I was diagnosed in about 2012 but had symptoms back until 2007, became triggered by accident and made worse from surgery. I am having a rough time right now with my body...in it twitching pulling and pain. Tomorrow I will ask the do to have an mri of my neck which hasn't been done in years. I am so worried about the combination- the spinal cord injury, and the muscle disorder. I do feel surgery/ perhaps anesthesia and certain people become worse from it. I have had bad reactions to it before. I forever feel weak and tired. Emotionally tired as well. I don't trust myself in ways I did before, it has taken my confidence.... I am bothered by population general attitude towards dystonia, there is a lack of knowledge out there.