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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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    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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    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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    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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    Related Experiences

    I have Asperger's syndrome and so I'm quite socially awkward. People just never take me seriously or think I'm a freak. I'm almost 17 now and I'm really worried that I will never...
    vivi9298 vivi9298 16-17, F 6 Responses Oct 6

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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 hr ago

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    12 months ago I got very serious pancreatitis caused by a vary rare hereditary condition that I have since found out I have called familial chylomicronemia syndrome or (FCS). (FCS...
    frog2000 frog2000 26-30, F Sep 27

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    ...and I like it. What a crazy thing to happen right as I'm falling asleep, and sometimes it's SO LOUD! Sometimes it's my name, of all things. If anyone reads this and doesn't know...
    incorporealist incorporealist 36-40, M 1 Response Oct 9

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    Asperger’s Syndrome From another planet to earth, I look around at all the people that pile on earth’s grounds. Questioning their social norms, studying their eye contact...
    kelseytoby1337 kelseytoby1337 16-17 4 Responses Oct 11

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    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 2 days ago

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    Apparently I have high functioning asbergers but low functioning autism..??? Confused!
    CheeseBomb500 CheeseBomb500 16-17, M 1 Response Sep 26

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    My sister has recently started to have severe vomiting that last up to 3-4 days, for two months. It correlates with her period. This time it was so bad she had to go to the ER...
    MissNinaBee MissNinaBee 31-35, F Sep 26

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    The worse thing is the paralysis and not being able to be expressive anymore with my face. I used to have a lovely smile and now it's gone. I hope that it's temporary...It's been...
    istajam istajam 36-40, F 2 Responses Sep 30

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    To be exact, this is the story. Doctors say I have symptoms of many but the closest one they could come up with is this because of me being born with no outer ears. Big neck. I...
    BigRalphie74 BigRalphie74 36-40, M 1 Response Oct 3

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    i have never heard of this disease
    mstud17 mstud17 22-25, F 1 Response Oct 4

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    And thanks to screw up all around, I've been without my medicine for the last several days, and have no idea when my refill will arrive. So, I'm feeling really antisocial right...
    OggggO OggggO 26-30, M 2 Responses Oct 6

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    I'm so over it! Getting constant cramps every day and sometimes it hurts so much I have to sit down and nearly cry. Tried going on the pill and it made the pain worse. I hardly...
    wannaplay122 wannaplay122 18-21, F 2 Responses Oct 9

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    I was diagnosed at 14 with PCOS and when the nurse told me, I just broke down and cried.. I semi expected to get it but I didn't want my fears to be true, my mum had it and a...
    BennetWitch BennetWitch 18-21, F 1 Response Oct 11

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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 22 hrs ago

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    hello need urgent help on cauda equina i have l4 l5 disc central disc protusion from last two years but recently i have a lot of tingling in my testicle area and from last two...
    karansapra karansapra 31-35, M Oct 8

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    My Struggle I have an extended form of Gluten and Casein intolerance. Corn, wheat, dairy, barley, flax, oats, quinoa, eggs, grapes, and tomatoes all trigger allergic reactions in...
    Tucker66 Tucker66 16-17 Oct 14

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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 3 days ago

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    I will warn this is a very lengthy post. Most will not read this, some will stop midway, but the few who read it is the reason for posting this. This is about how my school...
    Darknessisgrowing Darknessisgrowing 18-21, M 2 Responses 20 hrs ago

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    Missing out on so much school baffled my parents. They did not know what was making me so sick until my diagnosis. Battling the pain and exhaustion has been difficult due to the...
    chlo3ann3 chlo3ann3 13-15, F 2 Responses Oct 8

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    I always wondered what was wrong with me, since I was quite young. I wondered why I was so different from all of the other kids my age and why everyone thought I was strange. I...
    CreativeSpark CreativeSpark 18-21, F Oct 13

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    It is a burden, I was picked on frequently at school and I found it difficult to make friends(besides those who also suffer from disabilities). I find this a barrier to finding...
    T3chmupp3t T3chmupp3t 18-21, M 1 Response Oct 15

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    Every doctors and psychologist says it even my teacher but I know it's bullshit cuz I go out like every week and I always talk to random people. I can sit on the train station and...
    breastmilklover99 breastmilklover99 70+, M 1 Response a week ago

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    It's hell. I can't sleep for hours
    xxalicerosexx xxalicerosexx 16-17, F 1 Response 6 days ago

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    My medicine finally arrived today. About damn time, I was a wreck…
    OggggO OggggO 26-30, M 1 Response 2 days ago

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    The thing that bothers me the most is that I get so obsessed with one topic or one person that it is impossible for me to talk about anything else. My friends say they are fine...
    vivi9298 vivi9298 16-17, F 2 Responses 2 days ago

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    I have IBS (Irritable Bowel Syndrome). I've always had a very sensitive digestive system, but it became really bad in 2010-2011. It was triggered because I had severe depression...
    spacepixie spacepixie 22-25, F 1 Response 11 hrs ago

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    I'm so scared my husband will leave me to have children. He wants children, loves them, idolises them. I think kids are cute but I'm much rather enjoying seeing, learning and...
    CorruptedAngel CorruptedAngel 22-25, F Oct 4

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    I am Janice, a 77 year old female and had GBS 25 years ago. I was at UMMC then rehab for 2 months. Over the years I felt better but had some residual stuff, but about 8 months ago...
    jlcaputi jlcaputi 70+, F 1 Response Oct 3

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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 3 days ago

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    My twin brother has Down syndrome, along with many other problems, he can't talk clear, only we can understand what he's saying, I've heard people call him ugly, fat.. Short...
    Bflyboo14 Bflyboo14 13-15, F 2 Responses Sep 24

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    When I was 12 years old I started having extreme headaches. My mom took me to the neurologist and they said I would grow out of them and didn't take my pain seriously. Later, it...
    WynonnaMarye WynonnaMarye 18-21, F Sep 25

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    My mother was diagnosed with Guillian Barre Syndrome this past Aug. Since then she has lost all function from the neck down, including her mouth. She has been on a ventilator and...
    anthonykoryn anthonykoryn 36-40, F Oct 1

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    I am a mother of 4 children. 2 children wit my first husband and 2 with my second husband. My 16 year old daughter had been complaining of pain and swelling in her thumb for a...
    ratgirl73 ratgirl73 41-45, F 2 Responses Oct 2

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    I found out when I was 18 that I have Turner Syndrome. I have recently started really thinking about the impact on my life and really need someone to talk to
    crteach crteach 31-35, F Oct 15

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    I was diagnosed with gitelman syndrome back when I was around 16 yrs old (just turned 25). It took a really long time to actually get diagnosed. It was a very hard process. I...
    pinay89 pinay89 22-25, F a week ago

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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...
    HomeJamesASD HomeJamesASD 46-50, M 2 days ago

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    I am married for 4.5 years, i met my husband in the other side of the world... i moved whit my two kids to him (this is my second marriage)... when we started living together i...
    TikaBuendia TikaBuendia 36-40, F 1 Response Sep 24

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    Three times, to be exact. I am not the most valuable employee here but I do what I am asked to do until the job is completed. I don't take kindly to someone with 'little man...
    iamokaynow iamokaynow 31-35, M Sep 25

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    September 2014: I am 29 years old and to celebrate my birthday I went to spa with my girlfriend. Everything was smooth until the next morning. I woke up Sunday with a splitting...
    santrim santrim 26-30, F 1 Response Sep 25

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