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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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    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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    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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    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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    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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    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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    Related Experiences

    I am 24 and have another bartholin pop up today. The last one I had was a month ago in the same place it is now. They instantly became the size of about 2golf balls put together...
    lizbet91 lizbet91 22-25, F 55 mins ago

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    A description of my life can be broken down into 3 activities 1. Activities aimed at caring for my house and family 2. Activities that aimed keeping me entertained 3. Activities...
    colorbuff colorbuff 51-55, F 2 hrs ago

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    I need some advice from other people who have been through the mental health system and have been diagnosed with mental disorders. When I was diagnosed, it did not feel official...
    Hush92 Hush92 18-21, F 2 Responses 4 hrs ago

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    I absolutely love children, and I have always wanted to be a mum but I may never be able to have children and it's all my own fault. When I was 13 I was diagnosed with anorexia...
    SarahJane3 SarahJane3 31-35, F 2 Responses 4 hrs ago

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    I tried explaining to my mom over the weekend why I don't want any kids. There are many reasons but all my mom says is "you are in a bad financial situation now, you will change...
    AwakenAndLost AwakenAndLost 26-30, F 6 hrs ago

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    My name is Tiffani and I am looking for another person with KSS for my brother, Keith. He is 42 now and was diagnosed at 24. He started showing signs in his late teens, first by...
    Tiffanimorgan Tiffanimorgan 18-21, F 6 hrs ago

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    When I walked back in, you looked surprised. I was surprised too but I didn't show it. I was surprised by myself, a year ago I never would have even been able to talk to you for...
    AmberTheShyGirl AmberTheShyGirl 18-21, F 8 hrs ago

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    4. Sometimes I wonder where my life would be without the internet and communities such as EP. For as long as I can remember I have always used the internet as a platform for...
    TatlerAmbition TatlerAmbition 70+ 9 hrs ago

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    it doesn't matter if you're a wife, fiance, or girlfriend. If you love your man and want to stand by his side during this time then do it! love is love and it is beautiful...
    kianalove3 kianalove3 18-21, F 3 Responses 10 hrs ago

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    Can anyone help me I have Cerebral Palsy and I dribble all the time. I have poor mouth control and closure I wear a bib all the time is there any treatment that can be done to...
    Nic1981 Nic1981 31-35, M 16 hrs ago

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    I didn't inherit much from my mother, but one thing she and I have in common are that we dream very very vividly, and when we wake up we remember our dreams very clearly. I can...
    mandabanana25 mandabanana25 22-25, F 17 hrs ago

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    I'm 33yrs old, I was born with bi-lateral sprengels. Born to a family which didn't have much $, and having a deformity that's rare I went undiagnosed until a year ago. As a child...
    TrisCat TrisCat 31-35, F 1 Response 1 day ago

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    I came across this site reading everyone's stories feeling amazed about how I am not alone. I feel a little disappointed because everyone's stories are mostly or similarly the same...
    whyme96 whyme96 18-21, F 1 Response 3 days ago

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    This is in regards to a friend of mine who suffers from carpel tunnel. In addition to this...it also seems like the muscle, tendon, etc. in his arm is calcifying making it feel...
    jlg813 jlg813 26-30, F 1 Response 3 days ago

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    Today, I was diagnosed with Duane Syndrome. After 17 long years of wandering what's wrong with me, and why my eyes are so different from other peoples', I finally have closure. I...
    katiebug7 katiebug7 16-17, F 4 days ago

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    Good evening! I have been diagnosed with Marfan Syndrome when I was three months old by an ophthalmologist in a hospital in Poland. I am now 6'2", after two cardiac surgeries and...
    sakrona sakrona 18-21, F 3 Responses 4 days ago

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    Just found out my 11 year old son has Asperger's syndrome. I have suspected for a while, and the reason it went undiagnosed for so long is because he is so academically gifted. In...
    SoShellyBye SoShellyBye 41-45, F 2 Responses 4 days ago

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    I don't know for sure, but I know it's not normal. How can you be so tired from nothing? And this condition is what makes me depressed. Like I can be perfectly normal and then...
    fcksociety fcksociety 22-25, F 4 days ago

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    It's hard to really do anything.. When your a minor and have no family support... What's the point
    Norial Norial 13-15, F 1 Response 4 days ago

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    Getting old fears me. True. I am shocked that i am no longer a teenager, but why is it like only my age increases? I feel like my mentality when i was a teenager is the same as i...
    blitzkrieg7 blitzkrieg7 22-25, F 4 Responses 4 days 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 a week 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 a week 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 Feb 4

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    There's the oldest There's the youngest There's the only boy And then there's me...
    DreamRiver DreamRiver 70+, F 4 Responses Feb 4

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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 Feb 4

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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 Feb 4

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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...
    coffeeonice coffeeonice 31-35, F 1 Response Feb 3

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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 Feb 3

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    Any way to stop feeling fatigued? Anyone had any luck gaining energy back?
    WhiskeyT WhiskeyT 22-25, F 2 Responses Feb 2

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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 Feb 1

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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 Feb 1

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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 Jan 31

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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 Jan 30

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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