I Have Paroxysmal Kinesigenic Choreoathetosis

A Paroxysmal Kinesigenic Choreoathetosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Paroxysmal Kinesigenic Choreoathetosis. You're not alone. 49 People

    My Experience With Choreoathetosis

    I'm updating the story below. I'm doing really well! My movement disorder specialist has me on Topamax, 100 mg 2x a day, and this works really well for me! Yay! :) I also need to do my own part. I take good care of myself. I make sure I get enough sleep, eat well, and keep my...
    Marsela Marsela
    41-45, F
    9 Responses Feb 4, 2010

    My Son Trey

    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 and down stairs, into movie theaters...
    BillyMac40 BillyMac40
    36-40
    2 Responses Sep 17, 2012

    Long Ride

    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 on the right side, but then my right leg...
    Jozsa137 Jozsa137
    26-30
    4 Responses Oct 2, 2010

    New To Pkc/pkd, And A Little Lost

    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! My first on-set occurred the end of January...
    CKEH CKEH
    36-40, F
    3 Responses Jun 30, 2012

    Living With PKC Without Meds And My Experiences...

    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 pretty much stopped all episodes I was having...
    tjw11 tjw11
    70+, M
    3 Responses May 4, 2013

    39 Year Old With Over 20 Years Working With Pkc (pkd)

    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 finally got my parents to have me evaluated at...
    raymondnorth raymondnorth
    36-40
    Jul 7, 2011

    My Neurologist Believes I Have Pkc

    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 ******* movements in my left arm stemming from...
    GSC64 GSC64
    46-50, M
    2 Responses Jul 20, 2012

    Lost Childhood Experiences

    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 in front of my family, friends, or strangers...
    cmi0213 cmi0213
    18-21
    10 Responses Sep 21, 2010

    I Have Pkc

    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 free as long I take the meds (lamotrigine 50mg...
    mlm2010 mlm2010
    26-30, M
    2 Responses Aug 30, 2010

    My Pkc Story.....

    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 teen with the disorder and I've seen that a...
    xxmysteriousxx xxmysteriousxx
    13-15
    7 Responses Jun 13, 2011

    Outgrowing The Symptoms Of Pkd

    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 reached menopause. One of the few benefits of...
    Moreganyc Moreganyc
    51-55, F
    4 Responses Jun 29, 2012

    Pkd And Pregnancy

    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 talking to by OBGYN my medication is a class D...
    lizzy321 lizzy321
    22-25
    6 Responses Oct 15, 2011

    My Pkc

    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 mentally, because not only could i not control my...
    charlotte01 charlotte01
    26-30, F
    22 Responses Mar 8, 2010

    I have PKC and I am getting surgery soon.

    Does anyone know if general anesthesia or local anesthesia will impact my PKC, specifically will make it worse or start an attack?
    ddobis01 ddobis01
    22-25, F
    Jun 23, 2015

    Diagnosed At Age 38!

    Hi there. I am a 38y old woman all the way from Greece. I was already fighting a rheumatic disease (fibromyalgia) pain in muscles which took me 12y to be diagnosed, so I can understand the anguish and frustration! As far as pkc goes though, I just had my first fit! 2 months ago...
    Ledafm Ledafm
    36-40, F
    1 Response Apr 24, 2011

    Will this ever end? Hello.

    I'm 19 years old and turning 20 this year. I just graduated college and I'm about to find my first job. And I have PKC. I was first diagnosed with Seizure Disorder when I was 11 years old and 2 years has passed before my Pedia-Neuro doctor diagnosed me with the right disorder. I...
    cgdruta cgdruta
    18-21, F
    1 Response Apr 19, 2015

    My Secret Pkc

    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 not sure how long I have had PKC but my...
    marzipanlin marzipanlin
    41-45, F
    4 Responses Jan 13, 2011

    My Son Was Just Diagnosed With Pkd

    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 neurological. He never told me that it has...
    mymusickid mymusickid
    18-21, M
    2 Responses Mar 2, 2013

    My PKC.

    I started to get my attacks when I was at school and it took nearly two years to diagnose me. I now take 200mg of tegretol daily which stops the attacks. I wanted to ask; does anyone else get the strange before feeling? Its not quite a tingle or numbness its more like a...
    deanbuckley deanbuckley
    26-30, M
    2 Responses Oct 26, 2013

    15 Year Old W/ Pkd

    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 feel more alone. I've had it for around 9...
    todayistoday todayistoday
    13-15
    3 Responses Feb 28, 2012

    My Baby Boy

    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 diagnosis?  I am trying to connect with...
    mbitner mbitner
    26-30, F
    4 Responses Feb 6, 2010
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