I Have Hypokalemic Periodic Paralysis

A Hypokalemic Periodic Paralysis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Hypokalemic Periodic Paralysis. You're not alone. 45 People

    Hypokalemic Periodic Paralysis

    We found out a few mo ago my 12 year old Alex has Hypokalemic periodic paralysis, I have been trying to find a chat and /or support group with other people who fell her pain! Thanks and Hello
    26-30, F
    1 Response Dec 1, 2009

    My Mind Is Strong...My Legs Dont Go Along...

    I am 52 yo female that has never had a paralytic attack. I was adopted when I was young, but within the family, so my mother was aware that I could wake up one day (usually how the onset is) with a paralyzed body. Luckily that never happened. I had a few times in my teens and...
    Scatterboo Scatterboo
    56-60, F
    1 Response Jun 27, 2013

    Referral Greatly Appreciated

    Good day, I am looking for a peer/support group for this condition for a client of mine. It is extremely important for me to locate someone or a group that understands this condition and the daily challenges it imposes on ones ADL's.  We are in Ontario Canada. I have...
    AHWScoordinator AHWScoordinator
    Jun 11, 2008

    My Hypopp Experience

    I first started having symtpoms when I was 21. Some mornings I could barely do a standing squat and I had no idea why. Finally, when I was 22 I had a particularly bad morning where I woke up incredibly sore. I went to school and then when I went to leave class I could barely...
    AlfredSteno AlfredSteno
    2 Responses Aug 3, 2012

    Very Rare Onset At 27 Due To Stress And Excercise

    I have not been properly diagnosed as in Australia I haven't found any doctor or Neurologist that knows about it, but when I described my first attack, brought on by Slight excercise, dehydration and stress brought my whole body to be paralysed for 2 hours. Luckily I took some...
    Pharmjack Pharmjack
    26-30, M
    3 Responses Dec 25, 2012

    My Dad Has Hpp

    About ten years ago my dad was diagnosed with HPP. He started feeling weak and falling down after eating high carb meals and eventually progressed to where he was having episodes of paralysis. It took about six months to diagnose and figure out what was going on. Unfortunately...
    LucyChristy LucyChristy
    26-30, F
    2 Responses Oct 20, 2009

    Waiting To Receive A Diagnosis....

    In 2007 I was an 18 year old acting major who was diagnosed with Multiple Sclerosis which they believe I've had since I was 10 when I had optic neuritis and went completely blind for a week. Around the time of my diagnosis I started getting attacks of paralysis and collapsing. I...
    queen4drama queen4drama
    22-25, F
    1 Response Dec 9, 2011

    I May Have Hypokalemic Periodic Paralysis

    I just had a blood test that showed "extreamely low potassium" not sure how low yet, but will have another test in 2 weeks. I was diagnosed with Fybromyalgia 15 years ago and after suffering all this time I am seeing some of the symptoms disappear or lessen since my Dr...
    kennoo kennoo
    1 Response Aug 23, 2009

    Diagnosed But Questioning

    I started having symptoms when I was in the 8th grade. I had what they called freezing episodes or at the time sudo seizures, now my dr. is saying that it is a symptom of pp (rare even for the disease).  I had loss of feeling, weakness, and balance problems all through...
    musicwrite musicwrite
    4 Responses Jul 8, 2011

    Help Needed In New Zealand

    Hi my name is Debbie, I am 39 years old, I have this rare condition. I am doing many visit to hospital.........usually nd up in the heart ward, as potasium was 1.9 extremely low. After 5 days, I could walk again and move my arms. I am desperate for any information, particulary...
    debbie11 debbie11
    1 Response Feb 2, 2011

    Experience Is Everything

      Aw, yes, experience must be everything, if we are to experience life, touch those sexual erotic places that turn us on, to experience pleasure from a connection between us both as lovers, to experience everything without reservation.  Subtle love jesters, fingers...
    ClassyPoetryLady ClassyPoetryLady
    61-65, F
    Aug 27, 2009

    20 Year Survivor Of Hkpp

    I had my first episode of full paralysis when I was 14 years old. I had played sports since I was 5 years old, but after a day of football practice I noticed I was getting weaker each minute of the following day. The paralysis lasted 3 days and I was fearful it would last forever...
    Gcd553 Gcd553
    1 Response Jan 1, 2013

    Still Fighting

    I have suffered with this illness for over 3 years.  I have been hospitalised around 10 times with the paralysis and been on a potassium drip most times. The worst time was at christmas 2008 when a kidney stone lodged itself in my left tube, totally blocking my left kidney...
    aussiehokpp aussiehokpp
    41-45, F
    Oct 16, 2009

    My Husband Has This

    my husband is 29 years old and for the past year he has been experiencing weird episodes of weakness, fatigue, you name it!! it would only last like 1 hour or 2. we were never concerned about it until last week tuesday he woke me up at 330am and said we needed to go to the ER. HE...
    Chloelynn21 Chloelynn21
    26-30, F
    2 Responses Jan 10, 2010

    Almost Diagnosed!

    I also think that I have hypokalemic or normokalemic Periodic paralysis! I have just had dna tests done and am waiting impatiently for the results!!(Although I have read that they are only about 70% accurate. Great.) I have had episodes of paralysis for 9 years. They...
    alexin alexin
    1 Response Jul 26, 2009

    I have this sickness

    for long time,but I just find it before 1 year. I suffered a lot before they was able to diagnostic it. I would love to share my experience and with people here,so please contact me. Thank you!
    Ivaka Ivaka
    36-40, F
    1 Response Dec 14, 2013

    I'm Wondering If I Have Hypokalemic Periodic Paralysis

    But then again I might just have a mutation that pushes me in that direction. You see, I also have isolated cataplexy, which causes episodes of weakness and paralysis, and I've had it as long as I can remember. Those episodes are almost always triggered by strong emotions of one...
    NMmom NMmom
    41-45, F
    1 Response Oct 18, 2011

    A Brief Introduction To Our Hpp:

    My father had HPP. My son was unsuccessfully examined at the London Hospital when he was five years old. Following a move abroad he was incorrectly diagnosed with Gitelman's Syndrome and me with Barrter. Muscle weakness started in his early teens. These episodes became worse with...
    JoolieW JoolieW
    51-55, F
    1 Response Jan 10, 2010

    I Too Have Hypokalemic Periodic Paralysis Hpp

    I live in slc, ut. I have hpp. my grandfather, father, brother and myself. my daughter and also my niece. i have never met anyone outside of my family with this condition. ever.  My grandfather no longer has episodes after being diagnosed with diabetes, and my brother has...
    jamic jamic
    1 Response Aug 20, 2008

    Periodic Paralysis Network

    For information about Periodic Paralysis please visit our web site: Periodic Paralysis Network. We are also on Facebook. Thanks. Calvin
    chontherogue chontherogue
    1 Response Jun 22, 2011

    I Have Hypokalemic Periodic Paralysis

    Last year, I found out I have hypokalemic periodic paralysis.I want to know how you all cope with it. How do you make your family understand the serverity of this illness.
    blessings3 blessings3
    1 Response Mar 1, 2012

    More Than 9 Years and Still No Answer.

    Well, I believe I have Hypokalemic Periodic Paralysis, I'm being treated for it and I will be tested soon. I started with extreme fatigue in High School I was wrote off as being depressed. Then when I was 19 and with the man I knew I would mary I had a very strange and very...
    nemsmom nemsmom
    5 Responses Sep 20, 2008

    My Life Story

    I have had hypokalemic periodic paralysis since I was four years old. It has been very hard for me to accept this fact; however, I slowly got over by playing sport, getting involved in life, making friends, and accepting my disorder. Currently. I am a college student in my state...
    phawaii808 phawaii808
    22-25, M
    1 Response Apr 29, 2013

    Please Hear My Story

     "Here is an additional resource about the genetics of Hypokalemic Periodic Paralysis: http://www.accessdna.com/condition/Hypokalemic_Periodic_Paralysis/199.  I hope it helps.  Thanks, AccessDNA"
    yuriklastalov yuriklastalov
    41-45, M
    Jan 4, 2010

    I Was 18months Old When I Was Diagnosed

    I am 23yrs old and have suffered from HKPP since I was 18 months old, mom picked me up out of my crib and I weighed a ton. I got the gene from my dad and I have no idea where he got it. My HKPP also came with a heart condition I also suffer from heart arrythmiya severely I have a...
    lilbabygirl88 lilbabygirl88
    22-25, F
    1 Response Jun 17, 2012

    Hello all I am new ,I was diagnosed in 2005

    with familal periodic paralysis . I was hospitalized for 3 weeks having several full blown episodes daily while in the hosptial .I am not able to move at all when in the episodes only able to blink my eyes once for yes and twice for no.I have been in the hosptial three times...
    johnsonrobin59 johnsonrobin59
    56-60, F
    2 Responses Jan 28, 2016

    Hypokalemic Periodic Paralysis

    hello.im born and raised in alabama.im 13 and have the rare sickness Hypokalemic periodic paralysis.it all started when i was 9 or 10.it was springbreak and i woke up at 2 or 3 not able to move.i quickly panicked and called for my parents.they told me tht my father and sister...
    mcleland323 mcleland323
    13-15, M
    3 Responses Jun 27, 2010

    Can't Move

    Hypokalemic Periodic Paralysis runs in my family. It became active when I was 11. I was on a road trip with my dad, who also has it. We stopped for the night and I found that I could hardly stand up. My legs were weak and unsteady. Ever since that night, I've been living with...
    MoWhit MoWhit
    22-25, F
    1 Response Sep 11, 2013

    Healed :]]

    I have hypokalemic periodic paralysis. I have had symptoms since January of 2008. Last Novemeber (2010) I was fed up with doctors not being able to help me and switched to eastern medicine. I live near Austin, Texas and started getting help from an accupunturist that used...
    NatalieSue NatalieSue
    1 Response Jun 21, 2011
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