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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

    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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    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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    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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    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

    Ok so this is important for anyone who has CFS or anything like it. I have had this illness for 4 1/2 years now, and I've been to a fair number of doctors. But it took awhile to...
    Invisibleninja12 Invisibleninja12 18-21, F 1 Response Jan 14

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    Hello, My name is Mathilda Panzarella i have 17 years old and i'm a french girl so excuse me for my bad english.. I sign up on this social network, because since a long time, i...
    PanzarellaMathilda PanzarellaMathilda 16-17, F 5 hrs ago

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    my name is Ciara and I'm 19 and I am currently in the hospital post laminectomy. I have had back pain for about a year now. I had an inflamed SI joint that I recieved 3 steroid...
    cjacobs34 cjacobs34 18-21, F 1 Response 12 hrs ago

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    I'm a 21 year old female with possible hypermobility syndrome/EDS Type 3 or fibromyalgia. My mum has hypermobile joints but hasn't been diagnosed with HMS/EDS but has been...
    Kari9349 Kari9349 18-21, F Jan 1

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    A new information website has been developed for stiff-person syndrome to educate, empower, and advocate. www.thetinman.org
    TheTinManOrg TheTinManOrg 51-55 Jan 2

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    My partner was diagnosed with Stiff Person Syndrome in July 2014. Due to my own ignorance about the illness and my own selfish needs of refusing to accept her sudden disability, i...
    GeekyGirl82 GeekyGirl82 31-35, F Jan 12

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    Hello there! I'm currently making some researches about Maladaptive Daydreaming Disorder. A disorder in which the person uses daydreaming as a defense mechanisme to escape from...
    RichardAndon RichardAndon 22-25, M 6 Responses Jan 20

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    Can someone please tell me they're symptoms of polycistic ovarian syndrome x
    iwantababy111 iwantababy111 16-17, F Jan 21

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    I have it. My favorite symptom is that people with it prefer nonfiction over fiction which I do.
    bobherry bobherry 16-17, M 1 Response Jan 6

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    Having more problems with my right bicept, I guess I'll talk to my doctor about it, Still under stress from an unsuccessful consult about my neck injury, Doctors seem to judge me...
    JEM404 JEM404 41-45, M Jan 17

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    I had my diagnosis at 19, I have several other medical problems which have resulted in very limited mobility. I have good bouts where I can move much more easily but I have 'flare...
    noonespecial44 noonespecial44 26-30, F Jan 19

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    Post diagnosis things went sour, my carefully constructed world started collapsing around me. Everything I had done to cope with a condition I didn't realise I had became...
    Teab Teab 41-45, M Jan 20

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    When you have this it's easy to become absolutely obsessed with things, and that's not easy to deal with, even when I became devastated after finishing a book series that there are...
    Dakurti99 Dakurti99 13-15, M 4 days ago

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    how do people react when you tell them you have aspergers? I am always so nervous to tell people!
    kristykaz121 kristykaz121 18-21, F 11 Responses 3 days ago

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    Asperger's is like a curse to me. I didn't ask to have panic attacks in cluttered noises. I didn't ask to not have a normal social. I CERTAINLY didn't ask to drag my family and...
    msvlogwars msvlogwars 16-17, F 18 hrs ago

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    Got in trouble at school so many times because of it. Its ruining my life to be honest.
    idfwuu idfwuu 13-15, M 4 Responses Jan 1

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    How do you guys manage CFS? Seems like I can't live a normal life like I used to.
    awesomesauce2 awesomesauce2 22-25, M 4 Responses Jan 8

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    This is an oddly specific group
    Gabbi97 Gabbi97 18-21, F 2 Responses Jan 12

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    Which explains why everybody hates me. :D
    Symbiopsychotaxiplasm Symbiopsychotaxiplasm 26-30, F 4 Responses Jan 16

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    Found a very good read! Check it out http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure#Explanation_of_the_Fatigue_Problems_in_CFS_Patients
    awesomesauce2 awesomesauce2 22-25, M Jan 18

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    Asperger's symdrome is something thats gives me a lot and takes a lot too, I can recite 100 digits of pi easily, dolve a rubix cube in 1 min 13 seconds, and tell you anything about...
    Kringle95 Kringle95 18-21, F 2 Responses Jan 20

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    I always wanted to meet someone with aspergers like me wish I knew someone near :(
    kittyanthony kittyanthony 22-25, M 3 Responses Jan 20

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    Ugh. It's nearly midnight and my legs are still twitching and jumping. I've taken the meds, done all my stretches, taken aspirin, rolled on the foam roller. I'm so sleepy. It...
    Deedle623 Deedle623 51-55, F 3 Responses 1 day ago

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    Yes, and I've learned many ways about how to adapt to and around NTs. Contact me if you would like. :)
    wuiop wuiop 31-35, M 1 Response 1 day ago

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    I continue to have episodic dreams about the members of Radiohead. But never Ed. Or Colin. Sometimes Stanley Donwood is in them. Last night, Jonny, Thom, Phil, my mum and I were...
    3naturespice3 3naturespice3 22-25 1 Response Jan 16

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    I have Asperger's Syndrome and am depressive as well, I would love new friends
    deanratzloff deanratzloff 13-15 1 Response a week ago

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    I was diagnosed when I was four or five years old with Freidrich's Ataxia, after my parents noticed that I was stumbling more than usual. They did blood tests, spinal taps, MRIs...
    oudaine oudaine 22-25, F 1 Response Jan 20

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    It's a little inconvenient and lonely, because when people come home from work, I'm just going to start my 'day' lol ;) the offices close, the shops/cafes closed at night so I...
    rainyrainsky rainyrainsky 26-30, F 1 Response 5 hrs ago

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    Hello, Im a 15 year old boy and live in Finland, since i havent told anyone ever about my duane's syndrome type 1 i tought it would be a good idea to share my story here. I was...
    thundercoolmint thundercoolmint 13-15, M Jan 11

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    It's coming up to 2 years since it was suggested that I have Turner Syndrome... and one thing that I'm really struggling with is gender identity. Obviously, I have all the girly...
    LoneSouls LoneSouls 26-30, F Dec 31, 2014

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    My little boy (4years old) was diagnosed with Jacobs syndrome yesterday. Anyone else out there with experience of this chromosome disorder?
    rqs1983 rqs1983 31-35, F Jan 5

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    i am 26 and i have pica...am addicted to the smell of sand,cement,chalk,car fumes and dirt.i always enjoy sweeping dusty areas because of the smell.I've been doing it since...
    Efyamansa Efyamansa 26-30, F Jan 8

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    Hi there! My son is 3 months old and he has wpw syndrome. Since he was born he had SVPT two times in 2months...and when the doctors changed the therapy to Amiodarone he is stable...
    snegulka123 snegulka123 26-30, F 1 Response Jan 9

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    Hi Everyone, I just wanted to share my story with everyone! My story is a lot similar to a lot of yours out there. But I just found out that I have Swyer Syndrome. It was one of...
    kaylababy95 kaylababy95 18-21, F 1 Response Jan 13

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    I respect the sanctity of marriage. honor the vows and the ever after.It never occurred to me that my marriage will go to the drain. We had great sex. I thought it was the core of...
    4BlackForest 4BlackForest 36-40, F 2 Responses Jan 14

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    Hi, my name is Sally. I am 45 years old and all through childhood was simply told I just had an eye condition. The doctors never knew how to diagnose it or what to call it so it is...
    ssimpson69 ssimpson69 41-45, F 6 days ago

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    It's called "DMS" or Dirty mind syndrome, when everything you hear your brain automatically thinks of something dirty. Heart this if you have DMS
    chasetheweirdo8 chasetheweirdo8 13-15, M 2 Responses Jan 2

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    My son was diagnosed with myelodysplastic syndrome in 2012 during the summer before his senior year of high school. He had a bone marrow transplant and nearly died twice in the...
    lynnieruns lynnieruns 41-45, F Jan 4

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    I'm 21 and I have pica. I love the taste and texture of paper from cardboard, some types of tissue paper and other types of paper. It started when I was a baby, my mom noticed me...
    bunny413 bunny413 18-21, F 1 Response Jan 5

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    I was diagnosed bk in 2005, I eat flour right out of the bag.. I really wanna stop because I am eating it more and more I am up to 4 lbs a week I know its doing something to my...
    vishlia vishlia 31-35, F Jan 6

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