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I Have Episodic Ataxia Syndrome

A Episodic Ataxia Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Episodic Ataxia Syndrome. You're not alone. 17 People

    Trying to Find Someone Who Understands...

    About 4 years ago I started getting episodes of slurred speach and gait. Meeting new people was so exhausting, trying to explain to them what was wrong. "Hey are you having a stroke, a seizure? Whats wrong with you?" I was so exhausted just from what was...
    sailing286 sailing286 26-30 2 Responses Nov 20, 2008

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    Growing up with episodic ataxia

    Hi, I started getting dizzy spells when I was about 12, like many children I was unable to really explain my symptoms. After years of seeing specialists I had been diagnosed with epilepsy and in the end migraines. I decided to try again when I was mid twenties as my attacks were...
    Samspade78 Samspade78 31-35, M 2 Responses Dec 8, 2012

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    Invitation to Join Internaf

    Hi, My name is Michel Beaudet, I'm 47, have FA and live in Quebec, Canada. I'm sending this message to invite people to join a list for those with ataxia. The list is called Internaf and there's also a website full of info at http://internaf.org   International Network...
    data2 data2 46-50 Dec 17, 2008

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    Ellumsomeyearsago

     Hi,My Name is Michael I'm 57 yrs old.I had a stroke of the left cerebellum some years ago. It left me with Episodic Ataxia and I been dealing with it since. I've been taken out of the work force. I'm home mostly all day.My legs and hips are getting weaker and weaker so...
    bones100 bones100 56-60, M 2 Responses Sep 22, 2009

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    What Made Me Who I Am Today

    I found love to quick and became wounded to the point where now im broken, I feel like there is always that empty space inside me. I didn't always feel this way. I found love early...To early. My first love broke my heart and ever since Ive been dieing on the inside a little more...
    DeborahFox DeborahFox 16-17, F Mar 12, 2012

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    Daily Struggle

    Hi every1 my name is leighton,im 28. I would like to share my story. I started with episodic ataxia when I were 11 years old but no doctors or specialist could find what were wrong with me. SORRY FOR MY BAD GRAMMA AND SPELLIN Now I will start my story. When I were 11 years...
    lwilky83 lwilky83 26-30 6 Responses Jan 22, 2012

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    Related Experiences

    So right now I have my two little dogs, a terrier/poodle mix and a possible shiba inu mix. And our big dog, a Great Dane/blue tick coonhound mix and oh yeah, her 16 3 week old...
    Env06 Env06 26-30, F 1 Response 1 hr ago

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    I have been trying to ignore my depression but i feel like im breaking
    MusicalGirl24 MusicalGirl24 13-15, F 1 hr ago

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    I am a tiny match, make me the raging fire, I am a dirty rag, make me the red carpet, I am a glowing star, make me the silver planet, I am a hot light bulb, make me the flaming sun...
    Shahedansharif Shahedansharif 16-17, M 1 hr ago

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    Her name is Malorie and she's on my dance team. She's straight and I have a HUGE crush on her! Last week we were supposed to write something nice about the person the the right of...
    Brooke6813 Brooke6813 13-15, F 1 Response 1 hr ago

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    My mother told me that trust has little to do with lies. It's about opening up your heart and handing the keys. Who will lock eyes with your demons, and declare them human. The...
    ExquisiteMind ExquisiteMind 70+, F 2 Responses 1 hr ago

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    It is that feeling where you want nothing more than to be with her, you want to grab her by the waist pull her close and kiss her deep. You want to let your passion for her to take...
    TexasBrian TexasBrian 36-40, M 1 hr ago

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    i know one day i will get married and have kids of my own i will be a good dad too
    autism1011 autism1011 22-25, M 1 Response 1 hr ago

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    im in the early stages of carpal tunnel syndrome in my right hand. i dont wear a brace yet. i go through pain and numbness in my fingers. its kinda weird.
    noaht43 noaht43 41-45, T 1 day ago

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    Thick blood (also known as hypercoagulability, Antiphospholipids, and Hughes Syndrome) is a condition where the blood is more viscous (thicker and stickier) than normal. The...
    topcap2017 topcap2017 41-45, M 1 Response 1 day ago

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    So I have a question. For me, when I am about to faint, I become really incoherent. I forget what I am talking about, I say off the wall things, and I can barely walk straight. It...
    imstrongerthanyouthink imstrongerthanyouthink 18-21, F 2 days ago

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    There's the oldest There's the youngest There's the only boy And then there's me...
    DreamRiver DreamRiver 18-21, F 2 Responses 2 days ago

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    Another bout has struck me down, looks like another few days of severe rest. Lucky me(!)
    ProjectExperienceNameUser ProjectExperienceNameUser 26-30, M 2 days ago

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    I don't understand why they are subjecting me to this? They first suggested Turner Syndrome to me 2 years ago and referred me for yet more bloodwork on my hormones - the laugh of...
    LoneSouls LoneSouls 31-35, F 2 days ago

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    i have several mental illnesses. i have been hospitalized many times and in rehabs. i take medication every day. i hate stigma and discrimination. it is wrong. i have...
    cosmosdrift cosmosdrift 31-35, F 1 Response 3 days ago

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    Broken Heart Syndrome is real. SO happy I DiDN'T GET THAT! But I was HEARTBROKEN for MANY, MANY months. It took another guy to help me forget and keep me distracted but that dude...
    endlessl0ve endlessl0ve 26-30, F 2 Responses 3 days ago

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    Any way to stop feeling fatigued? Anyone had any luck gaining energy back?
    WhiskeyT WhiskeyT 22-25, F 1 Response 5 days ago

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    i'm 40 years old and have polands syndrome.i was always told that i just had a birth defect and that was it but finally a doctor diagnosed me.i was fine when i was younger but for...
    Brewdogg Brewdogg 36-40, M 1 Response 5 days ago

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    Homeschooled my entire life I suck at Math Still don't have a driver's license (and haven't practice-driven since last summer) I missed out on pretty much everything cool in the 9...
    FluttershyLabeouf FluttershyLabeouf 18-21, M 1 Response 5 days ago

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    I have the pais syndrome an intersex condition. I am a FTM/Libragender and I have bottom dysphoria and I am happy though that I'm intersex, though worried too.
    Yviroc Yviroc 22-25, T 6 days ago

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    Does anyone else experience a great feeling of anxiety and impending constant doom from this? Like something is terribly wrong...does anyone else feel this horrific panic deep in...
    myreality1 myreality1 36-40, M a week ago

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    My husband and I have been trying to get pregnant for the past year. Nothing. I have two beautiful twin daughters. Natural conception, first pregnancy. I finally went to see a...
    Butterflykiss707 Butterflykiss707 22-25, F Jan 30

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    Is there anyone out there who has scleroderma of their organs? I now have it in my esophagus and lungs. Is this a death certainty. All I read is no cure and short life span. 3-5...
    jojosig jojosig 46-50, F Jan 28

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    I have had scleroderma of the esophagus for @ years now. I have woken up on respirators more than once. Now I have been told its in my lungs. I have Lupus and CREST. I feel like I...
    jojosig jojosig 46-50, F Jan 28

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    New low: as some of my friends may know, I was violently abused, raped and borderline tortured my my stepmother and stepsister following my fathers passing, and I left when I was...
    Nihl Nihl 18-21, M 1 Response Jan 26

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    My 10yo son has a missing right pec muscle, but no other symptoms of Poland. He's very sporty and it has made no difference to what he can do, in fact he has developed a huge...
    TKDmum TKDmum 41-45, F Jan 26

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    I have had this for at least two years. Always had insomnia and higher than average need for sleep, but when I started drinking I began to sleep later to avoid the hangovers. Add...
    tophertime22 tophertime22 18-21, M Jan 25

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    My name is Kristen Phelan and I'm a casting director working with Watercooler Casting. We are currently in development of a new TV project that is looking to document and bring...
    thekp129 thekp129 41-45, F Jan 25

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    I was born with it. This disorder has really changed my life. All my symptoms of it: ----I tend to be socially anxious at times, not know what to say, I am not very good at...
    RainbowBlaze RainbowBlaze 13-15 2 Responses Jan 25

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    Update on my pica syndrome. I have been clean for 6 months now and it's was very difficult for the first couple of months, but now the only time I crave uneatable things is when it...
    666x1 666x1 16-17, F Jan 23

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    Hello! I have Goldenhar but unfortunately my parents were told I had congenital atresia and microtia. After 14 surgeries as a baby, child, teenager and recently as an adult, I can...
    khaireng khaireng 36-40, F Jan 22

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    You know it doesn't matter if your a straight A student, never cause any problems, on a scholarship offering/grand champion team.... Your still less wanted... And can't get what...
    Norial Norial 13-15, F Jan 22

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    Ive had pica for about 8 years but it's been on and off. It started when I was 8 and was going through abuse.I smelled toilet paper in the cupboard and was immediately attracted to...
    Savannah98 Savannah98 16-17, F 1 Response Jan 20

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    I would love to hear from someone who has had a similar story and a positive outcome! My doctor was not really forthcoming with information, and to be fair, I had so many...
    3Es1A 3Es1A 31-35, F Jan 19

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    Well been diagnosed as having aspergers does it make me a bad person?
    pleasingmyself pleasingmyself 51-55, M 4 Responses Jan 19

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    our health problems may be related to your environment. Americans spend approximately 90% of their time indoors, where dust, germs, allergens and mold can accrue within the...
    aurhahn83 aurhahn83 61-65, M