Just a quick note to say hi!
I've just read your post and see you are still trying to get help for your daughter. I am so sorry that she is going through all this. I have started a group on facebook, there are nine of us in the group, all women we call ourselves the jerky girls club! If you would like to look us up the group is called spinal myoclonus.
We are not doctors but sufferers and know how it feels to have a body that is out of our control.
Wishing you and your daughter all the best.
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