Movement Disorders

[minnie]

I just found this site today-hope someone can enlighten me. My 17 yr.old son had a sudden onset of involuntary movements 6 months ago. At onset was just in his hands, within 4 days progressed to most body parts, and not tremors anymore and ranges from rapid shaking to forceful jerky movements and flailing of arms. The duration ranges to under 5 minutes to 1 1/2 hours which are extremely grueling-he has rapid movement of eyes, and neck as well. Sometimes jaw movement. He can lose the ability to walk and be able to talk sometimes and sometimes speech is stuttering. He can have 1 to 3 of the severe episodes within hours and with isolated tic or jerk like movements inbetween. Then some days or succession of days just the isolated movements throughout the day. All the routine blood work done for evaluation of movement disorder came back within range. The only elevated was for Epstein Barr which was very high. He had a brain MRI with and without contrast. Also a sleep deprived EEG. When the EEG was done he did not have any involuntary movement-this does occur for blocks of time on some days. EVERYTHING has come back normal/negative/within range. PLEASE, can anyone tell me for an accurate EEG would his involuntary movement have to be occuring during the test. We have video segments of the episodes from onset to current. So far we are still traveling through specialists and referrals-so far the diagnosis is: tic disorder versus myoclonus. Any and all input, reaction, suggestions, ideas and information about an accurate EEG I sure would be thank you.

[chloe]

Yes, he needs to have the abnormal movements during the EEG in order to rule out epilepsy. I also recommend an EMG, this measures the speed and duration of the movements and can distenguish between tics and myoclonus. I recommend you go to Mayo Clinic in Rochester Minnesota. I'm a 17-year-old girl who had a sudden onset of myoclonus, and my neurologist at Mayo was the only one who could help me. It turned out I have a rare brain condition and surgery was the best treatment, but I've been very happy with the outcome. I also think Epstein Barr can cause involuntary movements, but I'm not sure. I would look into that.

[minnie]

thank you chloe for your input-the last weeks we were able to get into Stanford in Palo Alto,ca and saw a Neurologist in the Neurosciences Dept. My son was diagnosed now with Chorea. Possibly a reaction to many viruses he encountered-the Doc's tell us this is an autoimmune disease and the area in the brain that contol movement was the "target"- guess its a wait and see now. The series of viruses he had started 12/2007 and the onset of movement was 4/30/07. We were told sometimes these movements disappear in months for some, and others it can persist for 1 to 2 years from the date of movement onset. We're almost at the year mark and we have seen some decline-it is just a very lengthy process. But, more positive is that it has not gotten worse. Thanks again Chloe for your reply-I wish you continued health...minnie