My last message was weeks ago. I have been concerned about my son Nathan who has Moya Moya. He has been experiencing alot of jurking, he's never still. He had an EEG done 3 weeks ago and we went to Gainesville yesterday for the results. Dr. Michael A. Pollack seen my son and diagnosised him with Chorea Movement Disorder. He said there are medicines to treat the disorder but they have major side effects. He said it is caused from the strokes which are caused from Moya Moya. He has no control over his right arm and has stopped using it. He is in PT and OT. I have read the info on the internet about Chorea and I can't understand it. I'm not to good with the doctor's language. Also, I was not aware that Nathan has a severe case of Moya Moya. I thought it was all the same. His MRI shows the vessels are growing but he still has the strokes. He's had the surgery on both sides same day. I thought if someone has the time or knows something about this disorder who can explain it to me, I would be grateful. I thank God it's not seizures but what is it? I decided to wait before giving him medicine to see if he would recover on his own. The side effects scare me. His last stroke was just 2 months ago. The one thing I did understand was it is heridatary. What does that mean if no one else has signs of any kind?

Thanks for listening and I would love some knowledge on this disorder.

God Bless, Saundra

Saundra,
 I am not a doctor, but I will try to help you unsrestand this movement disorder better.  I sounds like it is a condition that causes muscles to move involuntarily.  The condition can be caused by many different things, some hereditary and some not.  Here is a great website that lists all the possible causes.  (If you will notice, under "Vascular" you will find Moyamaoya syndrome)

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This website also discusses medicines used for treatment:

"The mainstay of treatment in adults is the class of "neuroleptics," including haloperidol and pimozide....These drugs selectively enhance the function of the indirect pathway by blocking the inhibitory effect of dopamine on this pathway. However, the incidence of side effects in children from neuroleptics has been reported to be as high as 20%. Therefore, it is often safer to start with an alternative medication, such as a benzodiazepine, particularly clonazepam, diazepam, or clobazam. According to reports, certain anti-epileptic medications, such as valproate and piracetam, may improve the symptoms of chorea."  

Essentially, it sounds like muscle relaxers may have less side effects than these "neuroleptics".  However, I was under the understanding that muscle relaxers could be addictive and quite sedating.  Maybe these are the medicines you are talking about.  I hope I have been helpful and not too discouraging.  I am so sorry that you and your son have to go through such a frustrating, scary condition...on top of MM!  I admire your bravery.  You both are in my thoughts and close to my heart.
LOL,
Stephanie

Saundra,

Hi...when Cara was 2.5 she had some involuntary arm movements (scary because the arm would move up and down from below her waist to above her head while she was coloring with her right hand).  She was walking like a little drunk person (which a person would do after they had a stroke) We had my dad to compare to as he repeatly had strokes.  Mom feared Cara had a stroke too but five days of tests showed no stroke (on the MRI - but have found information that sometimes they disappear before they had a chance to show up on the MRI)....the involuntary movements ceased over time - she had deathly high blood pressure at that time but the neophrologist (kidney doctor) stressed there was no relation between high blood pressure and the chorea movements.   She got better over time...still not diagnosed with MM at that time...no real medication either..just high blood pressure medication.   at 3.5 it came back (we thought another stroke)  MRI showed nothing still...chorea movements not as bad as she was stronger so arm didn't move as high...she got better...then happened again but not as much movement....was told as she got older the movements would cease to exist...........

.......we are thankful we didn't stop right there.
.......second opinion and a much better MRI machine showed lots of spots on her brain...meaning lots of little strokes over the time.
.......spect test showed low blood flow.
.......angio confirmed MM.
.......surgery was schedule for few weeks later.

But your post is the first time I saw "chorea movement" as that was what her doctor called it while unsure if she even had MM.

Her doctor simply AMAZED at her progress since the surgery...even scratching his head, pointing at her, talking to his resident doctor...saying you wouldn't believe what Cara went through, and how much the surgery she had a year ago REALLY helped.

Cara is on Trileptal (very mild anti seizure medication that does not require regular blood testing to be sure liver is ok)...due to her continuous flow of TIA's....been on it a year.....been without TIA's now for a month...but will continue on Trileptal for a while longer.

She has not  had any involuntary movements since the surgery...which was a year ago.

Hope this helps,....will keep Nathan in my prayers.

Carol

Great job in explaining it Steph!! I had written a post also, but you did a much better job!

All I can say about it is, it's my understanding that Chorea has been described as one of the rarer presenting features of MMD, and since Chorea is a primary feature associated with a group of neurological disorders, it's hard to explain it to someone unless you're absolutely sure which type of Chorea your describing. It could possibly be a involuntary movement disorder from MMD, or a seperate neurological disorder.  If your concern is that you're not sure what type of Chorea your son has been diagnosed with, I can only suggest that you insist on a better explanation from the doctor who diagnosed it. It's great that you're asking questions. Knowledge is everything in fighting this and all diseases.

I’m sorry I couldn’t have been more help. You and your son are in my thoughts and prayers.

Mar

Saundra-

Im sorry that i do not have and advice or help that i can give you but wanted to let you know that i was thinking about you and your son. All i can say is do as much research as possible and ask doctors as many questions as you need to try to understand this all. I hope that you are able to find some more info and you will be in my thoughts.

Christy