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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

    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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    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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    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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    Related Experiences

    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 Jul 24

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    All my life, I’ve felt different, like I just don’t quite belong in any group that I’m a part of. Trying to fit in has led to me to trouble. I’ve drank heavily, smoked weed...
    empoweredh22 empoweredh22 22-25, M 1 Response 4 days ago

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    I am at a loss and need some help! I went to urgent care in February because I had this horribly terrible rash that itched uncontrollably and was painful. I had clusters of what...
    SweetJFowler SweetJFowler 26-30, F 1 Response 3 days ago

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    I have been diagnosed with Asperger syndrome. Sometimes it just seems like it doesn't fit at all except the unsocial part as most of my routines has fallen apart well I guess this...
    Joiss Joiss 18-21, M 1 Response Aug 10

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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 Jul 22

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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 Jul 23

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    I've had depression and anxiety pretty much my whole life, leading to two hospital stays in my late teens. At that stage it was suspected to be some sort of psychosis, or...
    BJH72 BJH72 41-45, M 1 Response Jul 28

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    I actually don't know for sure if I have Sjogren's; my second appt with the rheumy isn't until the 19th. I've had horrible dry mouth, throat, eyes, etc., for a while now (3+yrs). I...
    Notasouthernbelle Notasouthernbelle 36-40, F 2 Responses Aug 6

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    Calling all women with POS!!! I haven't had a period in a year. The past week or so I have been lightly spotting with severe cramps. Yet still no period! Has this happened to...
    TheUnpredictable9 TheUnpredictable9 18-21, F Aug 11

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    I have had raynauds since at least 4 years old, but I didn't know what it was until about 13yrs old. This disease has been so frustrating because I feel like nobody understands it...
    allisondela allisondela 18-21, F 6 days ago

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    My doctor put me on levelen and told me to skip the white pills, so that I wouldn't ovulate. She told me to take the while pills once every six months to allow my body to keep...
    ChloeMaay ChloeMaay 18-21, F 5 days ago

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    https://www.kickstarter.com/projects/2084036675/artistic-autistic-awareness?ref=email My Kickstarter application is finally live. I have autism and I find the preconceptions...
    TheNakedPoet TheNakedPoet 41-45, M 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 18 hrs ago

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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 Jul 24

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    I've wondered it for quite a while, I do suffer from Generalised Anxiety Disorder so there's a bit of me that think it's more than that than CFS. I tend to ache all over on a...
    Reallifeperson Reallifeperson 22-25, M Jul 28

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    I was diagnosed at 27 due to tadpole pupil episodes. I always had a smaller pupil and droopy lid. Also a long time migraine sufferer. In the past two years, I developed new...
    telltalelemon telltalelemon 31-35, F Jul 29

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    I was at this 12½ year wedding day anniversary today. Way to many people. Couldn't focus on anything. Too much noise. And my phone died after the first 4 hours, but I was there...
    leejoonnieoppa leejoonnieoppa 18-21, F 5 Responses Aug 2

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    Do any of you keep like dairy/journal
    shadowfluffy6 shadowfluffy6 18-21, F 2 Responses 4 days ago

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    I'm quite shy and have Asperger's syndrome, and I desperately want to find someone who loves me for who I am. I doubt it'll be easy, but I hope I find them someday.
    Juri17 Juri17 16-17, F 1 Response Aug 5

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    I am 13 years old. My life has been all messed up because of aspergers syndrome. Aspergers syndrome is incurable. I dont like being bullied by anyone and if people bully me to my...
    Konerko555 Konerko555 13-15, M 8 Responses Aug 2

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     I don't actually have Aspergers Syndrome myself(that I am aware of). I am posting this story becauseI would like...
    Jugemu Jugemu 31-35, M Aug 3

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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 Jul 24

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    In April 2012 I was officially diagnosed w/POTS Syndrome after several months of symptoms of worsening symptoms. I was one of the fortunate few who came across a neurologist at the...
    Jill73 Jill73 41-45, F Aug 6

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    My nightmare was it was Gore In it I had a sister who was with down syndrome . we are in the house , the bunkbed room off from that was a room that was supposed to be of a...
    Organia Organia 46-50, F Jul 30

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    I am named after a syndrome? Im special :] lol.
    xMikayla xMikayla 13-15, F 2 Responses Aug 12

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    Is there anyone who has pain in night, too? I had a Transposition of the superior mesenteric artery in Germany by Prof. Sandmann last year. At first the result was very good. I...
    lebenskuenstlerin lebenskuenstlerin 46-50, F Jul 21

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    Well I had my first unplanned trip to the hospital on Saturday. Basically the heart murmur I have had for awhile finally did something bad and I ended up being wheeled into an...
    MattsShadow MattsShadow 18-21, M Jul 21

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    This is a follow up for my story "what doesn't kill you makes you stronger" My name is grace. I am now 16 years old and I just got my correction surgery last week! I had a muscle...
    marinagrace marinagrace 13-15, F 1 Response Jul 22

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    It started with me getting these high pitch squeals. Like a surge up my spine and unless I concentrated hard, it would come out. Usually when I was most peaceful it would suddenly...
    Skywalker1979 Skywalker1979 31-35, M 1 Response Jul 22

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    4 months I had rotator cuff surgery with a full recovery expected. Needless to say after several phydical therapy tratments and pain meds I had little to no relief. Finally after...
    fancyface19 fancyface19 46-50, F Jul 22

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    I'm not diagnosed due to the doctor saying it'd make it worse if i was. Iv'e said things before about it yet never this far into it i tell people i can cope, that i'm okay about...
    Autumnflowers Autumnflowers 18-21, F 1 Response Jul 23

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    I was only 18, my family life was dysfunctional and I was homeless. I was raped in a homeless shelter but kept the child because I was alone. When I met my son's father he had...
    mamabear1976 mamabear1976 36-40, F Jul 25

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    I have had POTS as a definite diagnosis for two years now, however I have had it for many years. I am 18 now, an have recently graduated May 24, 2014. During my junior year of...
    TheForestChild TheForestChild 18-21, F 3 Responses Jul 29

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    Anybody who has POTS have photophobia (sensitivity to light)? Mine is really bad and worsening. I don't know if it's another symptom of POTS or should I get checked out
    december789 december789 16-17, F 3 Responses Jul 30

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    After a childhood filled with severe pain, day after day in bed..... countless visits to Hospitals...Mri scans...specialist appointments which amounted to nothing, no one could pin...
    thedayyouwentaway thedayyouwentaway 36-40, M 2 Responses Jul 31

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    I'm beginning to think I have it. I've been craving nail polish lately. I love the smell of it. And now I want to taste it. I don't get why I suddenly got this craving, but it's...
    oathtoorder oathtoorder 18-21, F Aug 1

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    Do anybody have worse symptoms POTS at night.. I how 5 time harder symptom of POTS at night. How evening is coming my symptoms are getting much worsen. How day is ending my blood...
    Drybrain Drybrain 26-30, M 1 Response Aug 3

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    I have wasting syndrome and dementia but I'm currently taking medications for it and hopefully it helps me a bit so I won't have any of it anymore. & Yes it sucks a whole lot and I...
    jacedrew jacedrew 16-17, M 7 Responses Aug 3

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    Two days ago my 20 yr old son(my youngest)told me he was going to become a father, this I told no one( at my sons request) today my 24 yr old son ( eldest) told me he was going to...
    Memamsdaughter Memamsdaughter 36-40 1 Response Aug 3

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    In 2009 I was diagnosed with pandysautonomia - POTS after getting ill from having a flu shot. It has completely taken everything away from me. I have had problems with my blood...
    Buffy2014 Buffy2014 31-35, F 1 Response Aug 5

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    I have a 7 yr old adopted daughter that I'm very concerned about. She and her twin sister were abandoned at the hospital, born 3 mos. premature, and positive for methamphetamine...
    mama27kidz mama27kidz 56-60, F Aug 5

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