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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

    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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    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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    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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    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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    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 learned only a few years ago that I have Asperger's Syndrome and am clumsy as well as frequently speak very wierdly sometimes, and am socially awkward. I am also narrow minded in...
    Fenrirfenn Fenrirfenn 18-21, M 5 Responses Jul 3

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    I have Russell silver syndrome. It has given me health problems,I am way under the average weight for a normal 15yr old, I am 4'9 and will no longer grow.
    EvaJL EvaJL 13-15, F Jul 13

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    I've just found out today I have Carpal Tunnel Syndrome .. it's hard for me to participate in Color Guard ..and soon I feel like I would have to stop ..bc the pain is crucial
    lynn1497 lynn1497 16-17, F 1 day ago

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    23+ years ago I was diagnosed with MS, even though I never had a positive test. No blood test, MRI, spinal tap,etc was ever positive for MS. My symptoms were never an exact match...
    bonsaigirl bonsaigirl 56-60, F Jun 29

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    **** I get when I tell someone I have aspergers "But you’re nothing like ____!"
Sometimes I’ll tell someone I have aspergers and they’ll just happen to have a friend or...
    nikkianni nikkianni 13-15, F 4 Responses Jun 29

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    I feel like my universe is just so out of alignment.....everything i have known for so long is just not there anymore :0(
    itswonder4all itswonder4all 41-45, F 3 Responses Jun 30

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    Hello im Amiee i'm 17 going on 18 on July 20th you may have remembered my mothers post Cheryl about my condition. I am still having the hip pain in both my hips. I had the MRI of...
    KiraAyita KiraAyita 16-17, F Jun 30

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    It has been seven weeks since I woke with severe ear pain. I had a few weeks of dizziness and what seem to feel like water in my ear before that. I went to ER later that day...
    ksrooney ksrooney 56-60, F Jul 1

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    I was diagnosed with TTS when I was 24, but my symptoms really started when I was about 21. I am currently 29. It always felt like I was walking barefoot on gravel, no matter what...
    happymegwv happymegwv 26-30, F Jul 8

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    It's the reason 95% of everyone I have ever known has eventually pushed me away. I'm not trying to sound like a pity party but that's been my real world experience. I'm lonely...
    KusanagiShiro KusanagiShiro 26-30, M 4 Responses Jul 10

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    I have EDS and chronic joint pain. I also have Tendonitis. I wonder if my Tendonitis has anything to do with my EDS.
    elenanicole elenanicole 16-17, F Jul 11

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    I was diagnosed with Asperger's when I was 16, because the school nurse recommended that I get tested for AS. My teachers thought I was [pause] different. When somebody says you...
    RazorKenny RazorKenny 26-30, M 2 Responses Jul 13

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    I think I have Asperger's. I have been diagnosed with many disorders over the years, depression, anxiety, ocd, ptsd, and we have touched on Asperger's, but never has it been a...
    13thgen 13thgen 36-40, M 2 Responses Jul 16

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    Five different specialists have now told me I should start taking my medication now. Actually it could be six or seven but I don't want to. It isn't going to cure me.
    Teab Teab 41-45, M 2 Responses 3 days ago

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    I was recently diagnosed in December 2013. I have been doing Ivig infusions ever since. I am on baclofen, iron, meclizine, cymbalta, lexapro, suboxone for pain, toradol, vimovo...
    CatFlag CatFlag 31-35, F 1 Response 2 days ago

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    Something I am having increasing difficulty with at the moment is that nobody knows exactly how difficult things are for me. This includes myself. I don't know how easy...
    Teab Teab 41-45, M 1 Response Jun 29

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    My autism ruined most of my life. I wish I could relive as an autistic anthro fox
    Miserablechildhood Miserablechildhood 13-15, M 4 Responses Jun 29

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    I was just diagnosed this week. Now what?
    VBLOVE1106 VBLOVE1106 22-25, F 4 Responses Jul 5

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    my parents didn't tell me until i was eleven years old, so i found it a big shock. i spent my whole life thinking i was your usual normal-person-without-any-major-challenges...
    hans13 hans13 51-55, F Jul 5

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    NO ONE CARES ABOUT ME !! I WISH MY YOUNGER BROTHER WAS NEVER BORN THEN I WOULD NEVER BE SAD AND CRYING RIGHT NOW😭😭😫😭😭😭😫😢
    bela5562 bela5562 13-15, F 2 Responses Jul 6

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    Ugh. Joint pain is so bad when it rains. I just want to wrap up in a huge heating pad.
    ImBatmanNow ImBatmanNow 51-55, M 1 Response Jul 7

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    Sometimes I wonder what my family thinks with me having Asperger's or how long they've been keeping it from me. When I found out in February, my mom confessed to knowing I had it...
    kelseytoby kelseytoby 16-17 3 Responses Jul 8

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    I had what I thought was piriformis until it became chronic, simultaneous with my toes becoming restless. That sounded more like RLS. Then I had an inspiration and started wearing...
    echinoderm echinoderm 51-55, M 2 days ago

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    My Battle With Marfan's Syndrome I am a Marfan.. i.e. I have Marfan’s Syndrome. It is very rare and most of you reading this might not have even heard of it. I never knew that I...
    Eddiecrow Eddiecrow 41-45, M Jun 29

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    My Battle With Marfan's Syndrome I am a Marfan.. i.e. I have Marfan’s Syndrome. It is very rare and most of you reading this might not have even heard of it. I never knew that I...
    Eddiecrow Eddiecrow 41-45, M 1 Response Jun 29

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    I have Oral Allergy Syndrome
    n0ceur n0ceur 18-21, F Jul 7

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    I have Oral Allergy Syndrome. For those who aren't aware of what it is; it basically means that I can't eat raw fruits or vegetables, or else I'll succumb to an itchy mouth/throat...
    n0ceur n0ceur 18-21, F Jul 7

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    It took me 34 years to figure it out, but thankfully I have an answer to my health problems. I've suffered for years from numerous ailments, went through numerous medical...
    LostMittens LostMittens 31-35, F 1 Response Jul 15

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    4 months ago I began spending time with a boy who changed the way I look at everything. 3 months ago we officially started dating and I've never been happier. We both fell in love...
    eternalfrisson89 eternalfrisson89 18-21, F 2 Responses Jul 11

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    Hi, im Hollie im 14 and I've had Duane syndrome since I was born. Because of my Duane syndrome it means I can't move my left eye at all to the left. This really annoys me because...
    HMace HMace 13-15, F 1 Response Jun 30

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    Hello! I'm Kristina, I'm 18 years old. In February this year I was diagnosed Swyer syndrome. Although I'm trying to get used to require me to help people who know I'm going through...
    kika96 kika96 18-21, F 1 Response Jul 8

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    For about a year I've been considering divorcing my wife of nearly 8 years. Our relationship has never been great. We are great friends, but horrible lovers/spouses. We do things...
    randomtiger45 randomtiger45 31-35, M 1 Response Jul 1

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    My daughter is a little over one year old. ( I don't like talking in months)She has Down Syndrome. I don't treat her differently from my other kids. Her needs are a little...
    Kryzta Kryzta 26-30, F 1 Response Jul 8

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    My husband has Asperger's Syndrome. I am having a difficult time with our marriage. We have been married two years. He is a good provider and has good traits, such as being...
    Solfeggio Solfeggio 36-40, F 4 Responses Jul 11

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    Barth syndromeFewer than 200 living males are known worldwide with this disease. Symptoms vary largely between patients, from life threatening to non-existant. No patient has all...
    Uncertain153 Uncertain153 26-30, M 1 Response 1 day ago

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    My husband and I were in a motorcycle wreck in Feb. (2 days after our wedding in India). I'm interested in getting to know other people dealing with Compartment Syndrome, in hopes...
    JenniferLakhlani JenniferLakhlani 36-40, F Jul 13

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    Over a year ago I was diagnosed with Postural Orthostatic Tachycardia Syndrome. I've battled high school with this non curable disease, but I now I graduated and it is time for me...
    heyycutie16 heyycutie16 18-21, F 3 Responses Jul 13

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    I went to the doctors today to check up on my lymes. Last Time I was in there they re tested me to make sure I had it we got the results today and it came back negative. But Iv...
    Megan2020 Megan2020 13-15, F Jun 26

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    UK SUFFERERS - PLEASE GET IN CONTACT! So, I've never really wanted to write my story. Not because I am afraid or ashamed, but because I am so bored of talking about it, it makes...
    scharx scharx 18-21 Jul 1

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    UK SUFFERERS - PLEASE GET IN CONTACT! So, I've never really wanted to write my story. Not because I am afraid or ashamed, but because I am so bored of talking about it, it makes...
    scharx scharx 18-21 1 Response Jul 1

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    In 2011 I gave birth healthy beautiful baby. She was perfect and I loved her from the first time I saw her beautiful curly mop on her head and that chubby little face. As a mother...
    SweetAlibis SweetAlibis 26-30, F Jul 8

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