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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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    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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    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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    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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    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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    Related Experiences

    I am 15 years old I have Russell Silver Syndrome however the doctors did not diagnose me until I was 13 luckily I don't have all of the side effects however I am only 4'9 and...
    UNIJordanQUE UNIJordanQUE 13-15, F 2 Responses Sep 3

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    And through Asperger syndrome, I met a good friend on this website. Since then, we have met in person and he and I are beyond best friends; we are true brothers and always will be...
    chubbystringbean chubbystringbean 22-25, M 1 Response Sep 1

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    With help from my psychologist (who's very successful and specialized in autism, along with other things.) shed a light over a little something that I've been thinking about for a...
    MissClueless MissClueless 16-17, F 3 Responses 5 days ago

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    I used to really hate myself, I honestly did. But now, I'm happy I have what I have. When I was in elementary school, I never talked to anyone, I would walk around the playground...
    ThatRobotChick ThatRobotChick 18-21, F 4 Responses Aug 29

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    I am a 28 year old mother of two young children and a wife. In February of this year 2014 I was rushed into surgery do to CES. The surgery took care of the back and right leg pain...
    korinne44 korinne44 26-30, F 1 Response 2 days ago

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    I need help I can't find a girl that likes me and I mange to suppres. My tics really well and you would only really know if someone told you and well I think the girls I try to get...
    Sproketsocet Sproketsocet 18-21, M 2 Responses Aug 20

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    I have had RLS for about 5 years. It started after I tore my hamstring from my sits bone. At first it was constant. I couldn't sleep, I couldn't stand in one place for long or...
    Deedle623 Deedle623 51-55, F 1 Response Aug 25

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    I have suffered with CVS my entire life, from age two to now (Im 17). Along the way I've learned how to cope and help my episodes. All these helpful tricks may work for you but are...
    Platinumryan Platinumryan 16-17 Sep 4

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    I've taken 2 clonzepam, and a Requip, and two aspirins. I have stretched and rolled on my foam roller. It's 2:00 am and it will not stop. So tired. Need to sleep.
    Deedle623 Deedle623 51-55, F 2 Responses Sep 5

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    I was diagnosed at age 8 with Sjogren's (I am now 22 years old) I have never talked to another person with the disease but would love to. As you know if you have this as well...
    hollyphoenix92 hollyphoenix92 22-25, F 1 Response Sep 5

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    I don't have episodes as much as I used to but now it's just 24/7 burning and pain. Will this ever stop?
    Cvsgirl1222 Cvsgirl1222 16-17, F Sep 9

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    have plans for tonight? well too damn bad! Your getting bruises, cuts, pulled muscles, and a nice concussion, enjoy!
    thetalkingmushroom thetalkingmushroom 18-21, M 1 Response Sep 11

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    One of my more persistent tics is groping. If i notice, feel(like in a hug or brushing against me), or remember what they feel like, i have to grab a woman's breasts. I don't think...
    thetalkingmushroom thetalkingmushroom 18-21, M 1 Response Sep 11

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    Got it from my dad. I'm not as bad as he is cause I fight to make it not define who I am. Though at first I felt bad but then I felt happy cause I'm gonna get money from the...
    YLIhououin YLIhououin 18-21, M 3 Responses Sep 1

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    Uncoordinated Somehow, I'm reluctant to get hit with a ball, bat, shoe, kid, or some out of the blue object when I walk into a school gym. Now every time I walk anywhere near...
    kelseytoby1337 kelseytoby1337 16-17 2 Responses Sep 2

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    Another terrible night. Why does it take nearly an hour for the requip and clonzepam to kick in? I will take them earlier, tonight, but they make me loopy. I tried pickle juice...
    Deedle623 Deedle623 51-55, F 3 Responses Sep 6

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    So, not many people know of this and I think it might be a good idea to raise some awerness. Albright is a generic defect or mutation that basically makes my bones weak. I get 1...
    shadow2233 shadow2233 18-21, M 2 Responses 5 days ago

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    Its really annoying with the stupid spasms and twitches, and sometimes i can say bad stuff and it gets me in a lot of trouble :(
    RazorToMySkin RazorToMySkin 16-17, M 1 Response 2 days ago

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    Please help! Could someone clarify whether my symptoms could be endometriosis? I have been ill for over a year now and though many other conditions have been ruled out by my GP, a...
    NattieC NattieC 22-25, F Aug 25

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    I have Asperger's Syndrome It helps me find it difficult to talk to girls in the real world that probably why I'm single but I can't change it I was born with it but it upsets me...
    JonnyBurrows10 JonnyBurrows10 18-21, M 3 Responses Aug 31

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    I'm 18 and every time I look at myself in my bra & panty..I stare. I stare at my reflection and I'm happy with how I was born; bare left chest no pectorals/nipple/muscle just my...
    ardorzie ardorzie 18-21, F 1 Response Aug 22

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    Just recently I began researching on middle child traits. I've found out that middle child syndrome is very real and it's not only me who suffers from it. Growing up, I have...
    123eat 123eat 22-25, F 1 Response Aug 24

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    When I was 26 year old I found out I got Klinefelter Syndrome I get a hormone testosterone needle every 12 weeks for the rest of my life.
    blackcat055 blackcat055 41-45, M Sep 11

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    Having Aspergers Syndrome is quite challenging for me. I have always felt like a ghost or a being living in another world in high school. Because of my particular interests, I have...
    loveVictorandDumas loveVictorandDumas 16-17, F 1 Response Aug 21

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    I don't think I have pica syndrome or if it's just a nutrition deficiency but when I get a bath or something I sometimes have a chew on the sponge or something because I like the...
    lucymichelle lucymichelle 13-15, F 1 Response Sep 1

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    I have pica and I have done for as long as I can remember. Unlike most people who have the syndrome/disorder I have had cravings for a WIDE variety of things throughout my...
    Pandasaurusrex Pandasaurusrex 18-21 Sep 2

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    Hello my name is Mark Miller. I was diagnosed with Klinefelters Syndrome when I was 4 years old. My parents knew something was wrong when I could not speak words until I was 7...
    Mark7Miller Mark7Miller 18-21, M 1 Response Sep 3

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    Hi my name is Jaime I am 29 years old and in 2006 I was diagnosed with a very rare kidney disease called Gittleman's Syndrome its so rare that not very many people in the United...
    GSwife1313 GSwife1313 26-30 Sep 4

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    After my first bad concussion I became much more susceptible to them. Post concussion syndrome is terrible.
    Kingshelman Kingshelman 31-35, M 2 Responses Aug 25

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    I wish I could talk to my Aspie husband about the issues I have with our relationship, but as soon as I say anything, he gets so defensive and turns it back on me or becomes...
    TiffanyPerkins TiffanyPerkins 36-40, F 2 Responses Sep 9

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    I love looking younger .. I'll be 43 in oct and it's helps with old man syndrome lol
    Justted Justted 41-45, M 1 day ago

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    CAN I HAVE MORE RAT VENOM FOR MY MARTINI?
    JEM404 JEM404 41-45, M Aug 20

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    My name is Kate. I live in Oscar, Louisiana. I started experiencing symptoms in November of 2012 while pitching in a softball game. It all started with right shoulder pain. I was...
    Katedebetaz Katedebetaz 13-15, F 2 Responses Aug 24

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    I have gitelmans syndrome. Ya it's weird... Anyone else?
    Keekeem Keekeem 31-35, F 1 Response Aug 28

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    I have had bloating and gas, alternating with constipation and hemorrhoids, and was told I had irritable bowel syndrome, for several years now. in 2006, I went through some very...
    gastricwoman gastricwoman 51-55 Aug 30

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    My mom and I have WPW. She was diagnosed when she was in her 50's. She talked about having a racing heart with each of her pregnancies. After she was diagnosed with WPW, one of...
    milesdeb milesdeb 61-65 Sep 3

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    Wow!!! For as long as I can remember I have had cravings for weird non-eatable objects. I remember exactly when it started, I was about three my Mom and Dad had this ugly, green...
    RedVinekiss RedVinekiss 31-35, F Sep 3

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    I am not sure if I am diagnosed or not. My dr said I have tietze but he never did any real test on me. But the problems I am having are the same as with tietze, so that's who he...
    zerudahima zerudahima 22-25, F 2 Responses Sep 4

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    Does anyone spike a fever when they have episodes?
    december789 december789 16-17, F Sep 5

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    After being diagnosed and being put on a bunch of new medications, I gained 30 lbs in a matter of months. I was even eating healthier and trying to work out as much as I could...
    Samm86 Samm86 18-21, F 2 Responses Sep 5

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    That's what I thought when I read about Asperger's . I knew I had dyslexia. But I had difficulties that people with dyslexia don't have . So I thought co morbid . I wondered about...
    interlink2 interlink2 46-50, M Sep 7

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