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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

    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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    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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    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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    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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    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 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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    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...
    SunsetTears SunsetTears 18-21, F 4 days ago

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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 3 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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    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 5 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 Nov 15

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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 Nov 14

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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 5 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 a week ago

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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 Nov 16

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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 a week ago

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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...
    NihilImpetus NihilImpetus 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 Nov 13

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    Anyone else here have this illness?
    leyla29 leyla29 26-30, F Nov 15

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    I eat every type of soap anyone I can get my hands on sometimes my tongue is yellow and I have really bad side pains but I cant stop. I eat a bar of soap a month n it relaxes me...
    semorec semorec 18-21, F Nov 16

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    Marfan syndrome is the cause.
    MiddleSister45 MiddleSister45 41-45, F Nov 17

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    I found out when i was 13 years old and found out i cant have kids i tried Treatments gels tablets everything nothing worked so i went to anabolic steroids like dbol and it was...
    chris0478 chris0478 22-25, M Nov 18

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    Hmm lets see.. My aspergers was pretty bad back when I was younger, but I managed to learn how to simply read situations from facial changes. I still have trouble finding my own...
    oracnid oracnid 16-17, M 2 Responses a week ago

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    I've just gotten into toothpaste. I really want to eat it, but I have to control myself. Better get some gum, lol
    NatashaRose NatashaRose 18-21, F 2 Responses a week ago

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    So glad to have found a forum on which to share my experience with Aspergers. I'm hoping for some ideas and strategies to better cope. Both my Husband and Stepson are afflicted...
    Aspierollercoasterride Aspierollercoasterride 36-40, F 1 Response 1 day ago

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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 1 day ago

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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 1 day ago

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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 1 day ago

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    I was looking for the group "I have a hard life", but this group doesn't seem to exist. I guess my life has been pretty hard so far. It certainly has never been easy. But what...
    AmIAMaleHSP AmIAMaleHSP 26-30, M 1 Response Nov 16

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    This will be long and rambly, mostly because this is the first place I've found where I can vent to others who may be in similar situations that’s not FB related where everyone I...
    lisabug75 lisabug75 36-40, F 4 Responses Nov 17

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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 2 days ago

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