Living with Dystonia

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 the floor and there I stayed. NO movement from either of my legs. The spacity was so strong and the muscles so paralized I was not able to move. Everyone in the ER thought I was causing this. This along with a double MRI .and back pain rated at 10…they saw nothing!! I have had several more MRI’s and still nothing shows except inflamed tissue around the spine.

It is now March 2008…I have been a prisioner in my own home for almost a year now… I’m unable to drive. unable to work. and unable to clean my house, do laundry…or even shop. I’m under Doctors care..and seeing chrio’s 3 days per week…along with PT & OP I’m about to go crazy.

Last week I was *finally able to get a diagnosis from a Neuro-surgeon. I have Hemi-dystonia. It affects only the right side of my body and my voice…Making it hard to speak on the phone. The Doctors are now thinking it might also involve my renal system. So now I”m off to yet another Doctor. Due to all of this we (my husband & I ) are in the process of making our home more handicap accessible. This is not a small undertaking.

I live in the USA..the state of Arizona. If anyone knows of anyone else with hemi-dystonia I would love to hear from them.
I’m at a total loss as of what to do next!

Sincerely: Jennifer