Dystonia

[livingwith]

My story:
I was rear-ended in an auto accident in April 2007. I was pried out of my car, due to the fact that my *Right leg would not move and my joints would not bend. As I was taken to the hospital by EMT’s..I had left sided ticks and very limited speech; I was only able to say one letter at a time and for someone who likes to talk this was not an easy task.
After hours in the ER….I was finally able to sit up on the gurney….However as they helped me to stand up; my feet hit ...Read the full article

[mona]

Figuring things out-Mona
I don't know anyone with hemi-dystonia but I'm a 33 year old woman living with symptoms of MS and dystonia. It all happen when I had my baby four years ago. I knew I wasn't walking right and felt really tired after I had my bAbY. Doctors blew me off like your body has gone through alot and it is going to take time for my body to get adjusted. Well three years ago, I woke up in severe pain in the lower part of my body and then it progressed to tremors, slurred speech, lower waist paralized, dragging left side of body, blurred vision, twitching of one side of mouth, blacken out, etc. Flashing lights and certain temperatures will trigger this. Everyday is different and the symptoms come and go. I've seen 15 neurologists and several medical doctors and movement specialists and no one has diagnosed me yet. They say it looks like it could be MS or dystonia but all my MRI's are normal and other tests came up normal. They say my head doesn't move back and forth; therefore, it 's not dystonia. My head sway side ways.
I'm writing to say keep your head up and pray to God to get through this. At least you know what you have and you can research and ask questions about dystonia. I've gotten a power wheel chair and cane so far. I pull up with my arms on the floor to get where I want go when my wheel chair is in the front and I need it to get out of the bed. Try using a heating pad and hot towel on your forehead and neck area. Also, get someone to press their dumb in the hole where your hair line is and push up. This will stop you from tremors and can allow you to walk. My family came up with several techniques that really work. I can't rely on doctors because they don't know everything. I get frustrated because I'm not getting the proper treatment. It's like I'm left here to deal with all of this when I was a health young woman. My strength comes from my daughter. She keeps me going when I feel so helpless.