I Have Paramyotonia Congenita

A Paramyotonia Congenita anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Paramyotonia Congenita. You're not alone. 68 People

    Finally a Diagnosis!

    i just thought that i was uncoordinated as a kid.  i had an athletic build but my muscles would not keep in sync with any movement i attempted.  i also had painful leg cramps and had less energy than the other kids.  the condition slowly progressed and by my...
    nocoldplease nocoldplease
    51-55
    1 Response Jul 22, 2009

    Im So Glad to Have Found This Site!

     I have Paramyotonia Congenita. I am 41 & have 3 boys, two of whom have it also.  I grew up believing that my immediate family were the only ones with this "Inconvenient" condition.  It wasnt until I had children I learnt we were not alone but we were...
    Evenden Evenden
    41-45
    4 Responses Aug 16, 2008

    Long Family History

    My story started 33 years ago.  My mom noticed I had Paramyotonia when I was a baby.  She said that my arm would get stuck and I would scream because I couldn't get the bottle to my mouth.  They told me I had HKPP but I did some research and I can't say I have...
    pmcmom pmcmom
    31-35
    1 Response Dec 29, 2008

    Feel So Alone

    I am 59 years old and inherited this from my father. As akid i had times when i would wake up paralyzed and couldnt move. I also had frozen muscles and all the symptoms associated with the cold weather ect. My mother would always give me quinine and that seemed to help. I was...
    angieslc angieslc
    61-65, F
    Sep 19, 2013

    Trying to Learn More

    I have had to deal with paramyotonia congenita ever since I can remember.  My father's side of the family has this.  Past generations went to the doctor to find out about this, but no one could ever tell them anything.  I do not know why, but nobody went to see a...
    nichol19 nichol19
    22-25, F
    6 Responses Apr 13, 2009

    Being In Contact With People With Pmc

    i have pmc and have had it since birth.i am now 54. i would love to share to anyone with this disorder as i feel i can help pmc sufferers with the daily challengers that we have to face daily.i have just got this computer and i never realised just how many others have pmc. when i...
    jpr1957 jpr1957
    51-55
    5 Responses Aug 3, 2011

    Found Out By Accident

    After having 3 shoulder operations my doctor thought I may have carpal tunnel so he sent me to a neuologist for a nerve conduction test. While there the neurologist asked me how long I have had muscular dystrophy. I of course said I didn't have it. When she was done with the test...
    scaccia22 scaccia22
    46-50, F
    1 Response Oct 24, 2009

    Pmc And Surgery

    i have pmc and was one of the first to be diagnosed with this disorder when i was 15. i am now 54.my parents new there was something wrong when i was a baby and thought it was polio,but could never understand why i came out of my pmc eppisodes.i also have had shocking affects...
    jpr1957 jpr1957
    51-55
    4 Responses Aug 2, 2011

    Worst Nightmare Come True

    One of my worst nightmares, that I did not even know I had, came true today.  I have passed Paramyotonia to my oldest daughter.  Just thinking about it almost makes me cry.  I was so sure that she did not have it.  She will be four on July 4th, and until today...
    nichol19 nichol19
    22-25, F
    4 Responses May 17, 2009

    Does Anybody Hace These Symptoms

    Hi, I am 28 years old, from Colombia and was diagnosed with PMC about 2 years ago. I have some particular symptoms that are not the typical ones of PMC and wanted to know if someone else experiences them. The symptoms are:Twitching: Specially at noght several muscles start...
    pmcolombia pmcolombia
    26-30
    2 Responses Mar 6, 2011

    Paramytonia Me Too

    I've had paramytonia for as long as I can remember. Many of my family members also have it. So I am not alone as some of you are with it. My dad was diagnosed by the US Navy in the late 1960's. I was diagnosed that way was through his. I've never been to a doctor for it. My...
    mrslauracc mrslauracc
    31-35, F
    Sep 2, 2010

    Other Problems With Paramyotonia Congenita

    I want the readers to be aware, that if you plan on having surgery and you have this disease, please let the Anesthesiologist be aware that you have a higher risk of having "Maligant Hyperthermia". Let me explain . .  One of the problems of this disease is that certain types of...
    nshemanski nshemanski
    51-55
    2 Responses Feb 14, 2011

    Sports With Pc

    Does anyone have experience with medications for PC with sports?  I do pretty well with my main sport with some soreness and occasional cramping, but with working out, particularly with weights causes significant muscle soreness and cramping.  My main question is whether...
    rosalike rosalike
    13-15
    2 Responses Nov 10, 2011

    I Also Have Paramyotonia Congenita

    H i, i am a 14 year old boy that has paramyotonia congenita. "I got Eulenburg's". My mom has it and she found out that the disease comes from her fathers mother . We live in sweden and we are currently 8 that has it in our family. We like to know where you are from and...
    lolerboy lolerboy
    16-17
    Oct 4, 2008

    All In The Family

         I am the youngest of four children and three of us have paramyotonia congenita or as we like to call it the "freeze disease".  Our father passed this condition to us which he inherited  from his mother.  My two lovely...
    freezedisease freezedisease
    36-40, F
    5 Responses Jan 3, 2010

    Paramyotonia Sucks!!!!

    I have had this disorder since I was about 8 years old. No docs knew what was wrong and would tell my parents I was attention seeking or faking my symptoms. This made me angry and I finally quit talking about it. I managed to do what I needed to do by warming my muscles...
    nanaleesdoll nanaleesdoll
    51-55
    1 Response Jan 12, 2009

    Medication By Children

    I am a mother from the Netherlands. I'm having a child with paramyotonia congentia. My child is heving some medication: acetazolamide since the age of 4. Now my child is almost 10. The doctors don't know about the effects of taking this medication and medication for the blood...
    MotherofPMC MotherofPMC
    41-45, F
    1 Response Oct 7, 2013

    What Are Your Symptoms of Pmc?

    I also have PMC.  It is from my mothers side of the family.  I live in Canada and because there was a lot of people in my family (or so I have been told) who had it in a close area some doctors got excited and we have been subjected to a lot of studies and test...
    DamianWarS DamianWarS
    26-30
    7 Responses Jan 22, 2009

    Finally a Diagnosis!

    i just thought that i was uncoordinated as a kid.  i had an athletic build but my muscles would not keep in sync with any movement i attempted.  i also had painful leg cramps and had less energy than the other kids.  the condition slowly progressed and by my...
    nocoldplease nocoldplease
    51-55
    5 Responses Jul 22, 2009

    what is the best medicine

    for pmc ? is it diamox. do we have have to take diamox for the rest of our life?
    jkt2014 jkt2014
    26-30, M
    Apr 21, 2014

    Paramyotonia Congentia

    Hello, Like others, my family has shared this medical condition. If you don't have it then it is hard to explain.  My son and I currently deal with and are seen at chop of Phila. Does anyone get a surge of pain that follows the stiffness and lasts until the muscle relaxes? I...
    peggyw peggyw
    36-40
    Aug 26, 2008

    Driving Me Crazy Not Driving Miss Daisy....

     Hello everyone, my name is steven I have been living with this disease my whole life and just recently had it finally diagnosed. My problem now is that after moving to a new city my doctor seemed to think that having this problem wasn't a big deal. I can't tell you how...
    rinaldo rinaldo
    41-45, M
    4 Responses Sep 28, 2009

    Finally An Explanation!!

    Thanks to some pretty smart Neurologists, I finally have a name for this very rare and bizarre disorder. As a child, there was always something a little different about me compared to my siblings. I was very active, and was really good at things that did not require much stamina...
    InkInkaDink InkInkaDink
    51-55
    Dec 8, 2011

    My Tale of Woo

    Hi I'm 34 and I also suffer from "The Cramp" this is what myself and my family called paramyotonia congenita as we were growing up, as we weren't diagnosed til I was 23. My grandfather had it he was the only one out of 8, my mother who was the only one out of...
    ashley4 ashley4
    31-35
    1 Response Jan 6, 2009

    I Have Paramyotonia Congenita And Narcolepsy....i Think They Are Related.

    I have Paramyotonia Congenita and Narcolepsy....I wonder if they are related because I only had one gene mutation. I played Volleyball for years. Back in my youth, we played every position. When jumping, I felt stuck to the ground and could not jump high. I was also the only...
    Pennyinpain Pennyinpain
    36-40, F
    1 Response Apr 21, 2010

    Eye Issues With PMC

    My 16 year old daughter was diagnosed with PMC almost 3 years ago. She's had trouble with muscle spasms and lock ups with her arms, hands, back, throat area, etc. She's also experienced loss of vision in her left eye, accompanied by throbbing occasionally. Last year when this...
    hannabanana1996 hannabanana1996
    18-21, F
    Nov 12, 2013

    I Have Pmc!

    I am 24 years old and for as long as i can remember i knew something wasnt quite right with me!As a child i was diagnosed with Raynaud's due to the lose of my hands in severe cold but i had other symptoms that neither me or my parents thought were even related... (not that i...
    samilou samilou
    22-25, F
    Oct 28, 2011

    I Was Fortunate That My Parents Knew From My Infancy That I Had Pc...so Did My Father.

    My family was the third confirmed family in the U.S. with PC. My grandfather and uncle participated in reseach and testing at the Department of Health, Education and Welfare, National Institues of Health, Natioal Institute of Neurologial Diseases and Blindness,  Medical...
    sharronaisenman sharronaisenman
    66-70
    Jul 31, 2011

    Wow it is so nice to finally find a group of

    people that actually know what it is .... I was diagnosed when I was 2 years old (I'm 23 now) hence I've been living with it all my life. My mum tells me she found something was wrong because I was having trouble walking at the age of 2 and she actually got worried that she...
    magn0l1a magn0l1a
    22-25
    Sep 24, 2015

    Hello

    Hi, i am a 14 year old boy that has paramyotonia congenita. "I got Eulenburg's". My mom has it and she found out that the disease comes from her fathers mother. We live in sweden and we are currently 8 that has it in our family. We like to know where you are from and...
    lolerboy lolerboy
    16-17
    Oct 4, 2008

    Paramyotonia Congentia

    Hello, Like others, my family has shared this medical condition. If you don't have it then it is hard to explain.  My son and I currently deal with and are seen at chop of Phila. Does anyone get a surge of pain that follows the stiffness and lasts until the muscle relaxes? I...
    peggyw peggyw
    36-40
    Aug 26, 2008

    Newly Diagnosed And Tired.

    I am forty years old, well almost forty-one, and was just recently diagnosed with this awful disorder. It has been a difficult process. I also have cystic fibrosis, mild scoliosis, and severe arthritis. The arthritis is the result of severe bone injuries sustained in a car...
    jmayham jmayham
    41-45, F
    1 Response Sep 24, 2013

    Physical Therapy

    I have lived with this all my life. My Dad and all his siblings have "it". We call it "numbness" which isn't accurate. Limbs aren't numb they are stiff. Anyway I have dealt with the name calling and bulling all through school. My face would contort and or my legs or arms would...
    corvette13 corvette13
    41-45
    1 Response May 20, 2013

    I Waited 14 Years To Be Told I Have Paramyotonia Congenita

    Waited 14 years to know i have paramyotonia congenita  it feels like a life time. I started with stiffness in my arms that make my hands stiff so picking things up was a nightmare. with my wife in hospital with our 3rd child that mean that i had to do things  for my...
    docherty docherty
    41-45, M
    1 Response May 25, 2010

    I Hate Pmc

    How many times as a child did I play tag, or ice skate, until I couldn't walk any more?  Why did I allow that to happen to me just a couple of years ago trying to keep up with a group on a hike?  I have this. I feel it every day, walking up a flight of stairs, or sneezing...
    mischiefmaker34 mischiefmaker34
    46-50
    1 Response Mar 14, 2012

    Paramyotonia Congentia

    Hello, Like others, my family has shared this medical condition. If you don't have it then it is hard to explain.  My son and I currently deal with and are seen at chop of Phila. Does anyone get a surge of pain that follows the stiffness and lasts until the muscle relaxes? I...
    peggyw peggyw
    36-40
    Aug 26, 2008

    Found Out By Accident

    After having 3 shoulder operations my doctor thought I may have carpal tunnel so he sent me to a neuologist for a nerve conduction test. While there the neurologist asked me how long I have had muscular dystrophy. I of course said I didn't have it. When she was done with the test...
    scaccia22 scaccia22
    46-50, F
    Oct 24, 2009

    Concerned Grandmother

    My oldest step daughter was diagnosed with paramytonia congenita at the age of 13. At first we just thought she was a little clumsy. She would drop things for no reason and had trouble climbing steps. One of her biggest challenges was to climb up onto the school bus. We had...
    colemanshenan colemanshenan
    36-40
    1 Response May 17, 2013
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