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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

    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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    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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    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'm so glad I found this. Many of your stories are so similar to mine. I've seen twenty six doctors, having been diagnosed with fibromyalga, chronic migraines, osteoarthritis and...
    jsxburt jsxburt 46-50, F 6 hrs ago

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    Hey All, I'm a 28 year old female with what I think is CVS. Every few months I am awoken in the middle of the night with the worst stomach ache in the centre of my abdomen and I...
    starjj starjj 26-30, F 1 Response Dec 7

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    I was diagnosed with HAS a few days ago - The initial cause was that I am experiencing eye issues and saw an ophthalmologist who then referred me to a neurologist who made the...
    barbarasayshi barbarasayshi 41-45, F 1 Response a week ago

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    I think. I'm no doctor, but I was reading the symptoms and I know I know that's no way tell tell if you have it. I'm emotionless, I don't make eye contact, I'm clumsy and awkward...
    TransmutedHeart TransmutedHeart 18-21, F Nov 21

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    So many people without it have no idea of the pain it brings along. Today, I'm meeting with the Lender for our new house, and I can't control the neck tics and I'm hurting on a 8...
    jeepers92 jeepers92 41-45, M 2 Responses Nov 22

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    I think I have Aspergers, I love arts so much I think it's the only life where I want to be, I love seeing great murals an architect designs, I can get obsessed and lost when I...
    perennialsorrows perennialsorrows 31-35, F 4 Responses Nov 27

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    I can't meet people's gazes. I have single minded focus on certain things. I am clumsy (found a way to help that.) I usually end a conversation just because I can't continue it, I...
    Ditum Ditum 18-21, M Nov 28

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    I thought I needed a good vent so here goes. Sorry if there is TMI. Every since I started my period when I was 11 I would be in excruciating pain, I would have to have time off...
    xxkerry1990xx xxkerry1990xx 22-25, F 1 Response Dec 2

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    A few years ago, I moved from the east coast of the United States to the southwest to go back to university after taking a year long break from school, and I didn't know a single...
    uglyhands uglyhands 22-25, F Dec 4

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    I was finally diagnosed as being on the spectrum on November 2nd, 2014. The test used was the Gilliam Asperger's Disorder Scale and it was a three hour test done over three visits...
    lyricalongings lyricalongings 31-35, F 1 Response Dec 7

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    The doctor finally told me I have it a year ago but so far no one believes it. Looking to meet others who would like to talk about it.
    keravon keravon 51-55, M 1 Response Dec 8

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    I've tried to use it to my advantage. I'm gifted with writing and I believe Aspergers along with an abusive home environment help to give me that as well as other skills. Being...
    KnaisGuy KnaisGuy 22-25, M 3 Responses Dec 8

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    This **** is no joke. The pain is pretty severe. I plan on having surgery, but I have to wait till after Christmas.
    Xplictt Xplictt 22-25, M Dec 11

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    I've struggled all my life socially. I never made a single friend until I turned 14. I was always "that weird, quiet girl." People were cruel to me and I could never figure out why...
    SecretGaygent SecretGaygent 22-25, F 5 Responses 5 days ago

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    My daughter has BCS. She's 6yrs old now. She was diagnosed when she was 18 months old. Her body was shunting itself when I was pregnant with her. She's currently on Coumadin. She...
    annagracesmom annagracesmom 41-45, F Nov 30

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    Has anyone else read the Michael Vey series of books. Kind of Awesome that TS has a champion. :)
    jeepers92 jeepers92 41-45, M Dec 10

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    So I have a very specific problem that I can't go a day without thinking about. I have this disorder called episodic ataxia type 2, and if you haven't heard of it (which is likely...
    theskyisarainbow theskyisarainbow 16-17, M Dec 11

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    Just found out... I wasn't surprised when the doctor told me the news. I had already been doing my research on it and my symptoms were practically identical to everything I was...
    anomalnonomous anomalnonomous 26-30, F 2 Responses Nov 21

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    I have a twin brother that survived Guillain-Barré Syndrome or GBS. He was diagnosed at the age of six and it took a year for him to get treatment and get over the disorder. GBS...
    tinytornado95 tinytornado95 18-21, F 1 Response Nov 26

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    I got diagnosed when I was 3 and I have it in both eyes. Just a few months before that I had a brain tumor. I can not begin to image what kind of stress this put my parents under...
    macyl macyl 18-21, F Nov 30

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    I have Hypermobility Ehlers Danlos Syndrome (EDS). I also have Postural Orthostatic Tachycardia Syndrome/dysautonomia (POTS). Ehlers Danlos syndrome is a connective tissue...
    jahoz jahoz 41-45 5 days ago

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    I am well acquainted with how disruptive motherhood can be to a woman's personal and professional autonomy. I will not be waxing poetic about it either (today of all days). I too...
    Tannasheart Tannasheart 46-50, F 2 Responses 2 days ago

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    I was diagnosed with Duane Syndrome in my right eye when I was just a baby, when my Dad noticed I couldn't move my eye. From a very early age I remember being in the hospital...
    baaraah baaraah 18-21, F Dec 5

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    I found out I had Duane Syndrome in both of my eyes when I was around 6 years old but it only started to seriously impact my life when I was 12. From what I remember my vision used...
    Ashleyc97 Ashleyc97 16-17, M a week ago

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    Hi there. Since I was born I have been diagnosed with marfan syndrome. Little did I know, being an infant, I was on the verge of having many issues in life. They may not have been...
    ChrisSFTY ChrisSFTY 18-21, M 4 days ago

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    i think Asperger Syndrome is very similar to Obssesive Compulsive Personality Disorder...
    Hanahbee Hanahbee 31-35, F 2 Responses 4 days ago

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    This experience message is for anyone who currently suffers from Hidradenitis Suppurativa (HS). PLEASE read my entire post before commenting, I have an EXTREMELY IMPORTANT and...
    starlits0ul starlits0ul 26-30 Nov 23

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    After 4/5 years of being called lazy when I feel too weak to move, or that it is all in my head, I was finally diagnosed with POTS yesterday. My parents aren't dealing with it well...
    anon1995 anon1995 18-21, F Nov 23

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    So, when we get our dogs as puppies, we're technically kidnapping them in a way, right? Since they have no inkling as to what is happening, to them it's kidnapping I suppose. (Or...
    LiveForAnotherDay LiveForAnotherDay 13-15, F 2 Responses Nov 24

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    Hi, Im new to this site, and anything like this. I recently found out that my BF, and as of last month, Husband has AS. I am not a Doctor, but he has all the characteristics and...
    Metalmissys Metalmissys 46-50, F 1 Response Nov 24

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    I don't remember a day where I actually felt normal. Could run. Didn't have my parents yell at me for "not controlling my symptoms". People asking why my legs are all red and...
    HebBay HebBay 18-21, F 1 Response Nov 24

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    It took the doctors almost 3 years to diagnose me. At first, they thought it was anxiety or depression. I was thrown around from hospital to hospital for about 2 1/2 years until a...
    Kristoe103095 Kristoe103095 18-21, F Nov 29

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    it was twenty four years ago when I had bouts of severe stomach pain. the kind of pain that would double you over. it was scary because I was pregnant at the time. I thought...
    regalshewolf regalshewolf 41-45, F 1 Response Dec 2

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    From the time that I was 7 years old, I have been medicated. I have been on 30+ drugs my entire life. First was Ritalin, that made me a walking zombie. From then on anti...
    sicknfaith83 sicknfaith83 31-35, F Dec 2

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    I was diagnosed with F84.5 ...... Asperger's Syndrome is an interesting foot note on the diagnostic scale of what is know 'autism spectrum disorder' a lot of harm was done when...
    Homejames Homejames 51-55, M 1 Response Dec 8

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    So I have this nice blue budgie that has recently been widowed (his green husband died). I believe the cause of death was curmudgeonly budgie syndrome. Truth is he was always a...
    Tannasheart Tannasheart 46-50, F Dec 9

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    Six years ago I broke my left foot. Nothing major, 6 weeks in plaster and then it will be ok. The cast came off, the bone had healed but the top of my foot was hyper sensitive to...
    barefootshirtless barefootshirtless 41-45, M Dec 9

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    Hi my name is Christina, I just found out I have pica. I have been licking cigarette ashes off of my finger. It started about 5 months ago while I was living with my ex. I was very...
    4cutiepies 4cutiepies 36-40, F Dec 11

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    Hi, I'm 43 and I think I have pica because I'm really addicted to eating ice and smelling washing powder. It's only one brand of washing powder I crave for(I'm not worried about...
    smurft smurft 41-45, F 3 days ago

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    At 14 he is presenting with some ridged exhausting repetitive, perseverant, behaviours. This is the first time I have felt pretty out of my depth managing his pathology. I am...
    Tannasheart Tannasheart 46-50, F 2 days ago

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