I have paroxysmal dyskinesia. (201001.06: Day 174)

Call me!
1 (703) 260-1471

NEED HELP FIGURING OUT MY LIFE?
Check out the all new jAILYPEDIA - http://jaily.wikidot.com/

DONATE MONEY TO ME :D
On PayPal: jules (dot) ismail (at) gmail (dot) com
http://www.theroachyjay.tk/

jaily is now on twitter! Be sure to follow @thejaily for teasers, updates, and more!

Please Visit and Subscribe my main account:
http://youtube.com/theroachyjay

Follow me on Twitter: http://twitter.com/theroachyjay
Add me on Facebook: http://facebook.com/julesismail
Friend me on MySpace: http://myspace.com/theroachyjaymp3
Comment my pix on DailyBooth: http://dailybooth.com/theroachyjay

Don't forget to check out my live show "The Jay Hour"
Wednesdays at 9 - 10 PM Eastern Standard Time on BlogTV
http://blogtv.com/people/theroachyjay

Category:

People & Blogs

Tags:

• paroxysmal
• dyskinesia
• episodes
• episodic
• paralysis
• loss
• of
• motor
• control
• muscle
• spasm

[SylviaBrallier]

Please feel free to join our Paroxysmal Dyskinesia support group on Facebook. It's great to have other people to talk to about your symptoms, things that help (and don't!), dealing with doctors, and for emotional support. Find us at: facebook.com/groups/paroxysmal­dyskinesia/

[buggerdeadbug]

Had it since I was 7, diagnosed at 18, now 44 y.o. My advice, don’t hide it, don’t let it get you down, try to sort it out (I did exactly the opposite by the way). Mine was usually on the right side but would sometimes move to the left as well. I had a few seconds to fight it before it took control of both sides and that was the worst part of it, when I realized I had lost. I had some pretty embarrassing incidents through the years.

[wtanoto]

i got this as long as i remembered. the treatment i received did not work. i stopped taking carbamazepine because i saw no hope. before that i used dilantin. i was confined in radcliffe hospital, oxfordshire for 8 days with recording attached to my head. not really nice. basically i can cope without medicine now, but when the worst came, i would fall to the ground. last time happen was in tokyo.

[TedLeavittMusic]

so strange to hear someone else describe my own experience. I always thought I was the only one until a neurologist at UBC research hospital put a name to it.

[pika23]

so I'm thrilled not to be the only "spaz" in the world!!! I don't mean spaz in a bad way ...just trying to bring some levity to a distressful disorder. I was just in the hospital for 2 weeks with eeg's etc...then 3 days in a psychiatric ward.

[FUNNYSUNSHIN3]

I got diagnosed with Paroxysmal Disgenetic Dyskinesia about less than a year ago but I've had it ever since I was 7. I'm 14 now. I really hope I will meet somebody to talk to that would understand(:

[jessieinmadison]

I can't tell you what a relief it was to find out that this is something other people go through, and that it's essentially benign. I really thought I had something very serious. It sounds like this fear/shame is common among all of us. I hope many more young people stumble onto videos or websites like this without waiting 16 years like I did! Thanks so much for sharing your story.

[jessieinmadison]

I lived with these *exact* symptoms for 16 years. It started when I was 12, and I was too scared to tell anyone. The trigger for me is sudden, intense movement. Like sprinting from a standstill. My muscles sieze for about 5 seconds. I developed strategies for hiding it, like tying my shoe, or playing with my hair. I don't think anyone ever noticed. It took me until this year (I'm 28) to work up the nerve to tell a doctor, and he immediately told me it was PKD. (con't in next comment)

[convoiter05]

I have been trying to figure this out since I was 15 yo. I recently got several clues from a neuropsychologist who characterized my movements as dystonic then while seeing a dentist, she told me that my description sounds like something her friend has called PKD. So when I went to a ophthalmology specialist for 4 episodes of blurry vision (3 recent) and migraines. He did a test called electroretinography; my test was abnormal. He says it can be caused by arteriosclerosis. Possible linked. Thx

[zachgism]

I got diagnosed with this when I was about 15 (about 7 years ago). The first neurologist I saw was able to diagnose it accurately. Got put on a small dose of carbamazepine (tegretol). I was prescribed 100mg per day and have gotten away with only taking probably 100-200mg per week, if that - if you look this drug up, you will see just how small a dose this is. My symptoms are almost completely under control, and are 100% under control when I take the 100mg per day. I have the same symptoms as you