I Have Paroxysmal Kinesigenic Choreoathetosis

I was diagnosed with PKC/PKD in April of this year, after four months of a "medical mystery" . Our frustration, as I am sure is yours as well, with the medical world, is why are so many Neurologist uneducated to the regards of Dystonia...

I have had PKD since I was in 1st grade. Now I am 22 years old and engaged. I have not seen my neurologist since my senior year of high school because my PKD was stable and Tegretol has been working for me from the beginning. From...

I was diagnosed with PKC at the age of 9. I was diagnosed with seizures and given a few medications before a specialist in Washington state, USA diagnosed me properly. The drug they gave me was tegretol, of which if used correctly...

I have to keep this short for now.  My son has had some health/medical issues which include laryngeal cleft, motor delay, and now paroxysmal kinesigenic choreothetosis.  Does anyone have experiences with a baby who has this...

Since last year I have been diagnosed with this. I was 13 at the time (just before my 14th) I think but I noticed the symptoms ever since I moved to Scotland from Thailand when I was 6 years old. Already I was different but this made me...

He's 14 and just told me about this over the christmas holiday and said it had been going on for at least a year. We saw a dr around that time for a strange movement with his arm and she said to try stretching it and didnt seem to be...

Hi! I'm a 34-year-old female and I have both Paroxysmal Kinesigenic Choreoathetosis (same as Paroxysmal Kinesigenic Dyskinesia) and Paroxysmal Dystonic Choreoathetosis (same as Paroxysmal Non-Kinesigenic Dyskinesia). For me this means...

Wow – I have just found this site after not wanting to look on the internet for so long in case I didn’t like what I found!  It’s really weird hearing you all describe something I thought no one would ever understand.   I’m...

Hi everyone, I am a 21 yr old male from buffalo, new york and i have PKC. I take 2 100mg tegretol pills each day. I have had this since as long as i can remember. I had many embarrassing experiences as a child growin up, whether it was...

I was diagnosed with PKC in high school as a sophomore.  I had trouble running in track and had episodes when just sitting in class or when I began moving suddenly.  I tried to explain this to my coach but it was beyond him.  I...

i am a 55 year old woman who stopped having symptoms with early menopause (47). when I was pregnant with my healthy boy I also had no symptoms. I have two sisters who also have PKD.Both sisters also stopped having symptoms when they...

My son had a febrile seizure when he was little. Since then he's battled with Severe learning disabilities, Gross and Fine Motor delay, Seizures and now he's been diagnosed with PKC. It's debilitating for him, He had trouble going up...

Ok, so I'm quite nervous about writing this, mainly because I've kept my disorder a secret for so long. But this is the only support group that I have found so far, and so I thought that I'd just put my story out there. Also, I'm only a...

I am a 29 year old female with a complicated medical history.  I was just diagnosed 2 months ago with PKD or PKC as its known here.  My symptoms have been around for a long time.  At first they were just my face and arm...

I have been suffering with PKC or as it it sometimes referred to PKD since i was 13 I am now 30. My symptems were everything listed under the sun including caffieine being a trigger. It was a very hard time for me physically and...

Hi everyone,

I am a 47 year old man and my neurologist recently told me he believes I have PKC. I started having involuntary movements in my late thirties and they have slowly progressed over the years. I started out noticing slight...

I have Paroxysmal Kinesigenic Dyskinesia (also known as Paroxysmal Kinesigenic Choreoathetosis). I've had it for 15 years and it's been hard to say the least. I was left undiagnosed by Doctors for 5 years as they refused to believe...

I have had PKC pretty much since I can remember. Mine was somewhat less intense as others I have heard about. My episodes only lasted about 15-17 seconds at a time. However I got properly medicated when I was 22 and now I am incident...