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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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    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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    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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    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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    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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    Related Experiences

    I'm currently in the process of analyzing some videos for my psychology class. The videos are the videos of dysfunctional families with young children that keep screaming for...
    RichardAndon RichardAndon 22-25, M 1 Response Apr 11

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    So, I went to see my doctor today and he suggested that I might have Asperger's syndrome. I don't really know much about it, so was hoping someone on here could enlighten me...
    Ambernonymous Ambernonymous 18-21, F 1 Response Apr 17

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    I do. However, I have no talent in anything whatsoever, I waste a lot of time and not to mention I wasted my life pretending to be someone I wasn't and never will be. I have a lot...
    FoxFan64 FoxFan64 13-15, M 1 hr ago

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    I found this image about this anime "Parasite" or "Parasyte", I think it's called both ways, I just end watching the anime and I remember thinking about the parasites like Asperger...
    SusAssasins SusAssasins 16-17, F Apr 26

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    I have aspergers and I thought meeting other people who have it would help me cope but it hasn't . It's like I can't even relate to those people who have it because were too alike...
    JoshRobin JoshRobin 18-21, M 2 Responses Apr 5

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    Yes, another malady. Actually I've had it since age 20 when I injured my elbow pitching. I loved to pitch and was asked to walk on to the UW Madison team back in 1975. I'll...
    steverick steverick 56-60, M Apr 7

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    I am starting to branch out. To be honest, it doesn't have to be over night, but very gradual. I used to think remaining silent and unnoticed would be better for me, but then you...
    LeaderOfThePack LeaderOfThePack 13-15, M 2 Responses Apr 13

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    I have this but I have periods of denial which mess me up mentally because admitting to having such a disabling disease is so difficult. I go to college because my parents forced...
    fallenstar23 fallenstar23 22-25, F 1 Response Apr 16

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    Ever since I have been diagnosed with Aspergers my parents have always said no i dont. However, they really dont know the half of it. I know i have it mild but i still have it and...
    internationalkoala internationalkoala 18-21, F 7 Responses Apr 17

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    I had a stroke March 2nd. I was in the hospital from March 2-March 25. Then I was in a rehab facility till April 19th. I started feeling this burning ,stabbing pain in my right...
    moonstar312 moonstar312 36-40, F 1 Response Apr 26

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    In the past 64 years since I contracted polio, nothing has been discovered to cure the later effects of polio, but Gabapentin for nerve pain (300 mg.) really helps me sleep at...
    julesgarden julesgarden 61-65 6 days ago

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    I haven't been diagnosed yet. my Dr is trying to eliminate anything else it could be, but I am suffering. I'm having a hard time going to work everyday cuz i can't get out of...
    kareenmarie kareenmarie 36-40, F 5 days ago

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    Breaking up is never easy regardless of condition. For someone with aspergers its all the more difficult. All the little things you would do in the day which revolved around having...
    Sakaratte Sakaratte 26-30, M 1 Response 4 days ago

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    Hard decisions are never easy whether you have a condition or not. You have to do what is best for you even if it hurts someone else. When you really care about someone often the...
    Sakaratte Sakaratte 26-30, M 2 days ago

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    my life has always been hard since the day i was born.
    dacosta4949 dacosta4949 22-25, M 3 Responses Apr 13

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    Well, I'm actually diagnosed....
    SAffRONisGODxSATAN SAffRONisGODxSATAN 13-15, F Apr 27

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    first of all I found this by chance and I almost started crying. I was diagnosed with PS when I was born. my right hand was small and webbed with the middle digits missing and my...
    Everrisingmoon Everrisingmoon 18-21, F 3 days ago

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    When I was a kid I never felt the same as any of my peers. They were always too loud, too rude, or too confusing for me to want to interact with. Most would bully me for my...
    Wandering2 Wandering2 18-21, F 1 Response 1 day ago

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    my Dr is trying to eliminate stuff before he diagnosis me with cfs. he recently did a mono test and drug test (which was my psychiatrist idea). I wonder what he'll try next...
    kareenmarie kareenmarie 36-40, F 1 Response 1 day ago

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    I invite you all to come over to my Poland Syndrome Suppport (USA) Facebook page, this is a closed group and we are very open and willing to lend advise.
    Gene47 Gene47 46-50, M 4 days ago

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    I invite you all to come over to my Facebook group page, Poland Syndrome Support (USA).
    Gene47 Gene47 46-50, M 4 days ago

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    I'm only 24 and I'm having severe back pain. Has anyone with Larsen Syndrome had back pain that was diagnosed and treated? What can I do? From what I can tell my problem might...
    Coiraingeal Coiraingeal 22-25, F Apr 16

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    Hi I'm Chelsea. I was diagnosed with Duane Syndrome (Type 1) at a very early age as the first few weeks I was born were scary for my mom because she's told me about my left eye...
    lovelymoon11 lovelymoon11 18-21, F Apr 18

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    i wasnt going to write a story about this.... but i will just to share y story with people and hopefully i can maybe try to help people who have it too...
    Slothislife Slothislife 18-21, M 12 Responses Apr 21

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    I have Alice In Wonderland Syndrome, I didn't know I had it until a few years ago. when I was a kid things would get big and sometimes everything just speeded up everything around...
    KValentine17 KValentine17 22-25, M 1 Response Apr 23

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    I've been diagnosed with SMA syndrome for a year. I started experiencing symptoms at 16. I was an incredibly stressed student. I was constantly studying and taking AP classes. When...
    jfletcher jfletcher 22-25, F Apr 26

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    I am in love with the man who sexually abused me for 3 years. it started when I was 13. I got extremely close to him. I looked up to him and I could tell him anything. He was my...
    jessical95 jessical95 18-21, F a week ago

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    I invite everyone that has Poland Syndrome to visit my group on Facebook it is a closed group, I look forward to seeing you all there.
    Gene47 Gene47 46-50, M 1 Response 4 days ago

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    Hi! I'm 17 years old, and I was diagnosed with Turner's syndrome when I was a baby. At school, a lot of people don't understand me, and so I don't have a lot of friends and often...
    musiclover48 musiclover48 16-17, F 1 Response 4 days ago

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    I have Asperger's and I thought meeting other people with aspergers would help me cope but it hasn't . It's like I can't even relate with those people because we're too alike , if...
    JoshRobin JoshRobin 18-21, M 2 Responses Apr 5

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    I just read how a lot of ppl love the smell of wet cement, when it rains. It arouses my pica. When I smell it I gotta have that smell in my mouth...dirt, drywall, and chalk.
    yummytummy610 yummytummy610 41-45, F 1 Response Apr 5

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    I have been diagnosed with pots for almost 2 years now. I'm 13 and going into 8th grade next year. My school is getting super stressful, I went for half a day last week and today I...
    luluhamilton luluhamilton 13-15, F Apr 6

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    Soooo....does anyone know the female equivalent of "small **** syndrome?" I'm asking for a friend who ran out of insults. lol
    HeyyMrsCarter HeyyMrsCarter 22-25, F 2 Responses Apr 11

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    I'm Jennifer. 28 years old, from CT, USA and I was born with total Athyrosis. .. no Thyroid at all. I've yet to meet anyone with this condition and frankly, growing up, it had...
    Genesis478 Genesis478 26-30, F 1 Response Apr 12

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    I have a potential narcissist mother who I rent a property from. She convinced me to rent from her when I was working and I stupidly agreed. Things took a turn for the worse in my...
    deleted deleted 26-30 Apr 17

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    No cures. Chemical imbalances. And new syndromes. Plus deformities. But no search for causes. Causes get denied. Msg. Gmos. Hgh. All denied. Statins did...
    convertihd convertihd 46-50, M Apr 19

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