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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. 16 People

    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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    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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    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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    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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    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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    Related Experiences

    although they say I have lots of defects with language and speaking, i have been told its because of asperger's syndrome i am really good in maths physics and other subjects that...
    daniel147 daniel147 13-15, M 1 Response Oct 22

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    I have a genetic collagen disorder, otherwise known as EDS. Not only do I have the hypermobility and classic types which cause fragile and stretchy body tissues, poor wound healing...
    KKookieMonster KKookieMonster 18-21, F Oct 21

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    I have RLS. I cannot just "stop moving". My legs twitch sometimes and sometimes, it just feels like I NEED to move. It's the most uncomfortable feeling I've ever had and it's...
    britteller britteller 18-21, F 1 Response Oct 23

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    I'm writing this now because I need to get it out. I'm having trouble deciding what to do. School's been out for a few months and since then I've tried a 30 day free trial period...
    ftmFreddy ftmFreddy 18-21, T 1 Response Oct 24

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    I learned I had it at age 5 and they said I was lucky to be alive. The only downside is that I have trouble learning in school
    metalchick18 metalchick18 18-21, F 1 Response Nov 4

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    It's so frustrating to me. I listen all the time to people who say that they WISH they had Asperger's and how WONDERFUL it must be to have it. Yes, Asperger's does have some...
    Aspiegirl421 Aspiegirl421 16-17, F 4 Responses 5 days ago

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    Its harmed me a lot. I was bullied mercilessly up until the end of high school, and I'm still worried that people would want to exclude me socially. Although I now appear to be...
    Almostanonymous Almostanonymous 22-25, M 2 Responses Nov 9

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    My medicine finally arrived today. About damn time, I was a wreck…
    OggggO OggggO 26-30, M 1 Response Oct 21

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    Had it for around six hours now :(
    TreeHuggingHippie000 TreeHuggingHippie000 41-45, F 2 Responses Nov 5

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    Honestly, learning I had it destroyed my hopes of being able to belong in society. Sorry i'm not being positive about my experience but that doesn't make it any less real. Let me...
    Darknessisgrowing Darknessisgrowing 18-21, M 4 Responses Nov 6

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    Do any of get to do anything alone?
    shadowfluffy6 shadowfluffy6 18-21, F 4 Responses Nov 11

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    I've suffered with RLS most of my 55 years. Found out gluten is a huge trigger. Especially at night. Take Requip 4mgs at night also. Definitely helps avoiding gluten.
    Sirkutter Sirkutter 51-55 4 days ago

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    It turns out I have polycystic ovary syndrome and that causes my testosterone levels to be dangerously high, estrogen to be dangerously low, insulin to be really screwed up...
    polyglotparrot polyglotparrot 13-15, F 6 days ago

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    Sometimes I think I exceed the standards of a schizoid but that is my secret to lock away, a secret that will never see the light... There are some, some creatures of light and...
    mlynnikens mlynnikens 22-25, F 2 Responses Oct 30

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    I have been self-diagnosed with rumnation syndrome and am 100% sure that I have diagnosed correctly. This syndrome is making me refuse to eat. I am disgusted with my subconscious...
    sassyanus sassyanus 18-21 Nov 3

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    ** I do not have Timothy Syndrome, my baby sister does, but she's too little to share her story ** My little sister was born a year and a month ago, premature. She was tiny and...
    allydoe allydoe 18-21, F 1 day ago

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    October 8 2014 was my last normal day . October 9th I started to feel tingling and numbness in my hands and feet. I felt weakness in my knees and fumbled things with my hands. So...
    aimeelou22 aimeelou22 36-40 Oct 21

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    How to get a adult diagnosis for ASD (Asperger's Syndrome) ... Do your homework .. It's a complex subject . Talk to those who have been diagnosed . The internet is a good place to...
    Homejames Homejames 51-55, M Oct 22

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    WILL POWER. HAVING A POSITIVE ROLE, RESPECT, FUNDAMENTAL ETHICS ARE A GOD GIVEN RIGHT, SCARRY TO THINK SOME ARE LACKING...
    JEM404 JEM404 41-45, M Oct 24

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    Hi, I was diagnosed with Limited Crest Syndrome around twelve years ago, having asked what it was I was told, too complicated, look it up on the internet....Anyway have the usual...
    gillybee77 gillybee77 66-70, F Nov 1

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    In year 1992, I came down with Ramsay-Hunt Syndrome. Its been a long battle. My face first paralyzed on one side and three months later, the other. This has affected my vision...
    Gustavp Gustavp 70+, M 3 days ago

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    My life will never be the same. In 2011, an extremely traumatic event happened to me and since then my life had never been the same. It's easiest to just list the thingsthat were...
    XxAlphaCentaurixX XxAlphaCentaurixX 26-30, T 1 Response 1 day ago

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    Hello all I have dermatomyositis. About 12 years ago it started. Before that I was ok, except I had Raynauds from a teenager, I thought it strange but never went to a doctor with...
    gabrielsgirl gabrielsgirl 61-65, F Oct 22

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    Hi all, I am writing from a television casting company. We are currently casting a new medical mystery show for Discovery and looking for patients whom have been diagnosed with a...
    mysticartpictures2 mysticartpictures2 36-40, F Oct 22

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    Most people with Asperger's have co morbid's - mine is dyslexia - when I was being assessed for Asperger's I studied it intensely on the internet and I was great full to be able to...
    Homejames Homejames 51-55, M Oct 22

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    Considering that when I was at school no one had heard of Asperger's it doesn't surprise me that not many people my age have been diagnosed. So their must be thousands wandering...
    Homejames Homejames 51-55, M Oct 25

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    I'm learning to deal with Asperger since my partner and his son moved with me and my son; his son has asperger and we have just known about it, it helps us to explain things... now...
    moniperu moniperu 46-50, F Oct 25

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    I have been married to a man with undiagnosed Aspergers for 10 years. For the first 5 years of our marriage he was out to sea (Navy) the majority of the time ; it's not until he...
    njleoladye njleoladye 36-40, F 3 Responses Oct 25

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    yeah it's called being better than you. B.T.Y. syndrome
    NotBiasedBAM NotBiasedBAM 18-21, M Oct 29

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    I was only diagnosed at 16. It's been really hard for me though. I nearly failed out of high school. I can't focus. And pretty much have all the symptoms that show I have it...
    yourbrowneye yourbrowneye 18-21, M 1 Response Nov 1

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    Shock is obviously the first reaction but having then seen and spoke to her in a strange way I feel relief for her. This might help people who know anyone that is suffering with...
    CoitusInterruptus CoitusInterruptus 31-35, F Nov 2

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    I was diagnosed with CIDP when I was 12 (year 7) and I laughed when they told me because even though I had no idea what it was and the name was such a mouthful, I was relieved to...
    AlexPeyton AlexPeyton 18-21, F Nov 2

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    I have had a college soccer career ending concussion. It's frustrating yes. Days are hard and few understand. But I am blessed and when I get frustrated I take a deep breath and...
    am0116 am0116 18-21, F Nov 2

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    I got a really bad call from the school yesterday. He's been supposedly acting out in class. He says his teacher never believes when he says another student is picking on him. My...
    flypiggie flypiggie 26-30, F 1 Response Nov 4

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    My whole life, I've been attracted to dry, dusty things. As a child, I used to volunteer to clean erasers at school so I could inhale the dust, but I never had a craving to...
    FaceFaceFace2 FaceFaceFace2 18-21, F Nov 9

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    I had a nervous breakdown 20 years ago and wasn't hospitalized. I lost my children to rich people and was homeless for 20 years. I have OCD< ADD, Fatherless Daughter Syndrome...
    growth60 growth60 61-65, F 1 Response Nov 9

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    Does anyone have anything other than POTS?
    december789 december789 16-17, F 1 Response Nov 10

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    I suffer from ibs (irritable bowel syndrome) I am 13 years old and it sucks and hardly anyone has it at my age and honestly no one understands me it affects my everyday life I can...
    emilycatherine emilycatherine 13-15, F 1 Response Nov 11

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    I started having symptoms at age twelve but I had a complete brake down my junior year of high school. I was trying to balance high school, cosmetology school, and my pots symptoms...
    alyssaanna alyssaanna 18-21, F a week ago

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    Anyone else here have this illness?
    leyla29 leyla29 26-30, F 5 days ago

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