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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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    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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    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

    Wtfvgggggggggggff v v v v. gv
    MangoMochi MangoMochi 18-21, F 16 hrs ago

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    Would like to hear from anyone who would be willing to share serotonin syndrome experiences.
    monser monser 56-60, M 2 Responses 1 day ago

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    Lost 6lbs in one year. With a severe growth hormone deficiency that's dangerous. I'm losing a lot of hair and I can't eat as much as I used to, every time I try to eat a lot I get...
    Jurnee16 Jurnee16 18-21, F 1 day ago

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    I have to say, that this has been an extremely long road. My husband has Asperger's. We didn't know, we had a pretty normal life for the first two years or so. After we had a...
    DeeDoo1 DeeDoo1 41-45, F 2 days ago

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    I was diagnosed with Basal Cell Nevus Syndrome in July 2015. Basal Cell Nevus Syndrome is a rare genetic disorder that affects 1 out of 100,000 people. I have a 50% chance of...
    Damocles19 Damocles19 13-15, M 1 Response 2 days ago

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    I had stroke when I was 29 years old. I am 35 years now, I was using contraception Nuvaring when the stroke occurred. I suffer CPS now. CPS took my life, I am not the same person...
    carolguate2004 carolguate2004 31-35, F 3 days ago

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    I do not have ATS but my 13 y/o daughter does. She was originally diagnosed w/ a heart condition known as Polymyphoric Preventricular Tachycardia at that time she was in softball...
    mindy918 mindy918 36-40, F 3 days ago

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    I live in my pyjamas. I feel like the energy Is better spent baking peanut cookies for my toddler then getting dressed.
    joyofabluesky joyofabluesky 31-35, F 3 days ago

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    I have Asperger's syndrome and Selective mutism. I do talk but sometimes my voice cuts off and I am unable to, I can't explain this but it can be quite a hinderance. I feel that I...
    Randompi Randompi 13-15, F 1 Response 3 days ago

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    I'm a 13 year old girl. and I have Brown Syndrome. As much as I try to ignore it. it prohibits me from doing more than people would think. I can't play staring games with my...
    Jay3421 Jay3421 13-15, F 4 days ago

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    please join gitelman/bartter buddies on fb. we have a great support system
    lilmomma1411 lilmomma1411 26-30 4 days ago

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    I have autism and it feels to me like im in a whole different universe not in a good way though and everyday im always fighting myself not accepting change and just bein self...
    aaronpayne aaronpayne 22-25, M 5 days ago

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    I've always been much better than most men at multitasking, I wonder whether that is due to the Klinefelter Syndrome?
    KSPerson KSPerson 46-50, M 1 Response 6 days ago

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    how is it with someone with aspergers syndrome? I have it. I had one serious relationship. I wonder if its very miserable being with me. since she cheated and my other short...
    kittyanthony kittyanthony 22-25, M 1 Response a week ago

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    I can't seem to go in a public bathroom if someone is in there. This ruins my school days and field trips where I've had to hold it in until I get a free moment at school. My...
    GhettoMemeing GhettoMemeing 13-15, F 1 Response a week ago

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    I was just recently diagnosed with fap - gardeners syndrome .. It's very scary at 17 having to deal with this , and since it is as rare as it is I have no one to share it with or...
    Escapeyourthoughts32 Escapeyourthoughts32 18-21 2 Responses Aug 27

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    I was diagnosed when I was 13. And I've gotten worse and worse. It's so exhausting even getting to the toilet. Headaches every day, noise just goes right through me. My muscles...
    deleted deleted 26-30 1 Response Aug 26

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    I start a project. When it is almost through, i think of a better project and ignore the current and the cycle continues.
    Timmoh Timmoh 16-17, M Aug 26

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    I am a 32-year-old male. I got sick with the stomach flu at age 12 and was left with rumination syndrome, or something close. Within a couple of weeks of getting sick, I...
    nthgmvs nthgmvs 31-35, M Aug 25

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    The doctors have diagnosed me with Spino Cerebellar Ataxia type 14. This means nothing. I don't trust the diagnosis. You see, I am 45 and have seen too many doctors for me to even...
    NMDewey NMDewey 41-45, M 1 Response Aug 24

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    Hi im 16 and i've had rumination syndrome for 2 years now. When it first started happening for what i can remember it was only tiny bits that would come back up after i ate and...
    brookechambers2 brookechambers2 16-17, F Aug 24

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    Does anybody have a GOOD experience with their Aspergers partner? For a while I thought I might've been attracted to somebody with the disorder, but everything on here sounds so...
    deleted deleted 26-30 3 Responses Aug 22

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    Hey I am 15 and have had rumination syndrome/disorder for almost a year now. I hid it from my parents for 4 months because I was so horribly ashamed about it. I thought that it was...
    alexcarlson2018 alexcarlson2018 13-15, F Aug 21

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    I have aspergers, mood disorder and depression when life is hard I feel that nobody cares I exist and I eat and write on here and play Rachel plattens fight song or look at my...
    FattyWithAttitude FattyWithAttitude 13-15, F Aug 21

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    I'm proud to have it. My councillor told me I '10x the women any bully will ever be' and I know that's a good thing. I'm a minority, one of a small percentage effected by this...
    Randompi Randompi 13-15, F Aug 20

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    Has anyone ever been to POTS Treatment Center in Dallas, TX? We have been saving up for me to go there and I was wondering if it helps at all.
    TavynKeylee TavynKeylee 13-15 Aug 18

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    I recently found out I have ORS and will need another suregy (14th since I was 19) to remove the remnant and clean up the cysts and tumors that have grown since the original...
    Deena76 Deena76 36-40, F Aug 18

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    I have had CRPS for 5 years. I am a flight attendant and had a passenger fall on me. I first noticed weakness in my legs and a shooting pain down my legs and severe low back pain...
    dedelocken dedelocken 51-55, F Aug 17

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    I might have AS. Any tips on how to manage it so as to avoid hurting people around me more (my spouse and family)?
    LolaHaze9 LolaHaze9 22-25, F Aug 17

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    I really need your help, I know you all are strangers but please... I think I have aspergers, the things I do in my daily life isn't "normal" to others. first off hi, I'm Andrew...
    deleted deleted 26-30 3 Responses Aug 16

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    Syndrome from The Incredibles is what happens when you don't outgrow your emo phase.
    mattinsula mattinsula 16-17, M 1 Response Aug 16

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    I do I have asperger syndrome
    Pedro1202 Pedro1202 18-21, M Aug 15

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    Hi I don't personally have fibromyalgia, but I am with a US company for all natural products that help various medical conditions, products for pain/inflammation for instance, let...
    carolgem carolgem 46-50, F 1 Response Aug 15

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    Can someone tell me what cvs is and explain what happens when you u have it
    CelticDragon561 CelticDragon561 51-55, M 1 Response Aug 15

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    Cvs cyclic vomiting syndrome is something I have and it sucks so much! Is there a way to add this is the category??
    deleted deleted 26-30 1 Response Aug 14

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