This is so rare! I was diagnosed in Boston in 6th grade. My sister has it also. Was on carbamazepine for years then switched to Keppra. I’m 41 now and not taking anything. It has really subsided over the years. It really affected me years ago in dance recitals when I had to enter the stage with my left foot. I was young and shy and too embarrassed to say anything. It also affected me in school when I was going to have to stand up to get an award and I was nervous. It finally came out when I was doing sprints in gym class. I told my sister first and as it turned out, it was happening to her too. I would love to learn more about this genetic disorder. It was years ago I was diagnosed with it but a blood test wasn’t done. Last year I did a blood test but it wasn’t found in my genes. I’m not sure why, I know it’s there.

This is what I have. I never went to the doctor until recently. The genetic test didn’t show anything, but I’m glad I got meds that are helping since it got worse before I took them and now it’s pretty much gone.

So THAT'S what I've been doing.

Lose the sound midway through!

what is the source of this video? and how to find more videos about movement disorders like this