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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. 15 People

    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...
    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...
    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...
    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...
    bones100 bones100 56-60, M 2 Responses Sep 22, 2009

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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...
    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...
    sailing286 sailing286 26-30 2 Responses Nov 20, 2008

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    Related Experiences

    I have Tourette's syndrome.
    mrhollingswortg1992 mrhollingswortg1992 22-25, M Apr 8

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    I have a question for everyone :) So I was diagnosed with Asperger's Syndrome a few years ago and am aware about it for a while now. Lately, however I have been having random...
    EurydiceKallos EurydiceKallos 16-17, F 2 Responses 8 hrs ago

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    There has been no official diagnosis. But, all my life I have felt very different from everyone else. Job after job I have had a difficult time forming close relationships and...
    pottersclay pottersclay 41-45, F 1 Response 8 hrs ago

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    I was diagnosed at the age of 17. Up until that point i spent my life with the perallasis and docters not knowing what it was. They thought i had a type od muscular distrophy and i...
    tabitha35 tabitha35 31-35, F Mar 19

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    So I am 21 years old and I suffer from Poly Cystic Ovarian Syndrome, I have done my research and unfortunately it comes with so many issues. But it is common and I would love to...
    o1Nadia1o o1Nadia1o 18-21, F Mar 28

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    Was diagnosed back in high school. Felt like it held me back from many things. Yea, I did go 2 dances, junior and senior prom, but people treated me like I was retarded. I'm highly...
    HottRoddTX HottRoddTX 26-30, M 4 Responses Mar 28

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    I found out I had Poland's Syndrome in my 30s ( I am now 48) when I was referred to a plastic surgeon. Had an operation but had to remove the implant as my chest cavity kept...
    gamordente gamordente 46-50, M 5 days ago

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    I was diagnosed with TS when I was very young. My case is mild and my tics are slight but I do feel the internal side effects of TS like anxiety, hyper vigilance, and some OCD. I...
    artMusicBrew artMusicBrew 36-40, M Mar 24

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    I am the middle of 5 2 older brothers 2 younger sisters. My brothers were always allowed to do what ever they want. Stay up late,drive, and lots of other fun stuff. My parents took...
    Jimmy1313 Jimmy1313 22-25, M Mar 26

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    I was just diagnosed a few months ago but I think I've had it for a few years now. The doctors actually found the tumor in my chest before they realized my eye drooping was Horner...
    Pinkyjolie Pinkyjolie 26-30, F 1 Response Mar 27

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    I personally don't have CFS but my mother has it and it's been one of the most difficult things to deal with on a daily basis. I have determined that my mothers stress levels...
    IamLerato IamLerato 22-25, F 1 Response 3 days ago

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    I started with pain at the first of January. Woke up one morning with the feeling that I was being stabbed in the shoulder with a knife. Used heat/ice thinking I had pulled a...
    msv123 msv123 51-55, F 2 Responses 23 hrs ago

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    Wow I dont know where to start.... after having being misdiagnosed on 12/27/2012 and sent home when i arrived because i was in so much pain i could not walk. Returned to the ER on...
    momndom momndom 31-35, F 3 Responses Mar 22

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    I am 32 years old, diagnosed three years ago. I have had 5 surgeries on my leg and 3 on my shoulder. I am on anti-depressants, nerve painkillers, anti-inflammatories and...
    gimpy55 gimpy55 31-35, F Mar 26

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    But it's not what everyone thinks it is. When you say 'aspergers', people think of socially awkward people who are obsessed with computers or science. But in reality, it's a lot...
    sarah19597 sarah19597 16-17, F 7 Responses Mar 27

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    I get reconstruction surgery July 16th!!! SO excited, but not being able to play field hockey because of it is going to suck. I'm terrified of going under but I don't even care...
    marinagrace marinagrace 13-15, F a week ago

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    Anyone with this won't to talk ? Just diagnosed today and would love to talk to others with it
    Mum2one Mum2one 22-25, F 1 Response 2 days ago

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    I have Postural Tachycardia Syndrome, as I only have issues with my heart rate not my blood pressure when standing. Does anyone else have this? What helps? I'm waiting on a call...
    Konig316 Konig316 26-30, F 3 Responses Mar 30

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    My names Alaina, I'm 17, and about three years ago I was diagnosed with Chiari Malformation Type 1. So freshman year of high school I started having really bad headaches, and found...
    burtala burtala 16-17, F Mar 27

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    Okay this very rare virus I contacted just over 26 years ago. Now I still can't get up from the ground in the sitting position without help. Do more exercise to strengthen your...
    JohnCrighton JohnCrighton 51-55, M 2 Responses Mar 27

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    Two last night! In the first, I was still in highschool I guess. I was on the bus ride home after a long and exhausting day and the girl sitting next to me asked if I wanted to go...
    PinkMellow PinkMellow 18-21, F 3 Responses Mar 18

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    Hello, I'm a mother of one handsome 9 month old boy. When my husband and I left the hospital June 29, 2013. We were never told that our son was born with Poland Syndrome. After his...
    Bernadzikowski Bernadzikowski 26-30, F 2 Responses Apr 2

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    Intramarine Isolation Syndrome. It is what I have, my disease. Cool. Quiet. Sometimes green, sometimes blue. Dark, or shining in the sun, but it always feels like no one ever...
    WickedScullyOfTheWest WickedScullyOfTheWest 31-35, F Apr 6

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    I am new to this as I noticed several posts about pots syndrome I was wondering if someone could help me? I have suffered with this since I was 14 (I am now 19) but was only...
    potsie2222 potsie2222 18-21, F 2 days ago

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    Fortunately I am self-employed and can sleep the hours I "like" to 6AM-1PM. Not that I really want to be this way, but every time I try to reset to normal time, it only lasts a...
    Pozadam Pozadam 46-50, M 1 Response Mar 19

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    I really need someone who knows what is going on to help me make sense of things. My partner of just over a year.. has spent the year breaking up with me. I am always fighting...
    maveric01 maveric01 41-45, F 1 Response Mar 20

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    I'm at a crossroads now, as I have four young children with my husband of 8 years, who has undiagnosed Autism. I have always just given my husband his way. I thought I was just...
    GMetz34 GMetz34 31-35, F Mar 20

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    Mild cp, deformed hand, poor vision and hearing, poor teeth, weak heart, something undiagnosed with my brain (sort like a stroke but not), type 2 diabetes, psoriasis, soliios, ADHD...
    dacraww dacraww 22-25, M Mar 23

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    Well my dad used to tell me off for eating. I always had a revved up metabolism which continued well into my teens. I could rival any teenage boy. But I was active- I never...
    NekroNomikon NekroNomikon 18-21, F 1 Response Mar 24

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    I have just been put on 10 sodium tablets per day. This is apparently meant to help my POTS, has this worked for anyone else?
    justplainhollyjayne justplainhollyjayne 13-15, F 1 Response Mar 24

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    I have just been put on 10 sodium tablets per day. This is apparently meant to help my POTS, has this worked for anyone else?
    justplainhollyjayne justplainhollyjayne 13-15, F 1 Response Mar 24

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    I have a brother with asperger but he was never diagnosed with asperger's. He was with some neurologists through childhood but all the time was the same thing "attention deficit...
    emi92 emi92 18-21, F 1 Response Mar 25

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    Originally diagnosed with a bacterial ear infection, I actually had Shingles that lead to Bells palsy / Ramsey Hunt syndrome, with the usual symptoms. This is the first time I've...
    johnsonfamily38 johnsonfamily38 51-55, M 3 Responses Mar 26

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    Please please respond if you are relatable. My anxiety with POTS has become so extreme and i am constantly worrying about every little thing in my body and always thinking...
    cassidybute cassidybute 18-21, F Mar 26

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    I have a really bad habit of eating flour. Its a really embarrassing habit so I try to keep it to myself but knowing there's other people with the same problem gives me comfort. I...
    KimmyO4Lifeex33 KimmyO4Lifeex33 16-17, F Mar 28

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    As a child I suffered from Exploding Head Syndrome.
    needlessthings needlessthings 31-35, M Mar 28

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      My 8 year old daughter has just been diagnosed with Melas after her first episode. She encountered loss of sensation down her right side, but this has now returned. We are...
    21sienna 21sienna 41-45, M Mar 31

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    My dad was exposed to it in Vietnam. My parents were told by a doctor I was slightly affected. Result? Brittle, easily broken teeth. Was told that by the time I was 35, I would...
    daddyj2008 daddyj2008 36-40, M 1 Response Mar 31

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    headcaches, dizzziness, like flu feeling in the head, im seying everything like in slow motion, heaviness of whole body, and everything combied together it making wierd feeling...
    rihcrissy rihcrissy 31-35, M Apr 1

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    I have been struggling with fatigue with pots for the last 15months. Has anyone found anything to help this?
    Kas25 Kas25 22-25, F 1 Response Apr 6

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    My daughter has smas and is being cured by tilting upside down at a 45% angle on her back with arms over her head.She was looking at a surgical feeding tube after two years of...
    racheldunkley racheldunkley 41-45, F Apr 6

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    I was 26 years old when I got GBS. I was a new mom of a four month old baby girl. Before she was born I had taught 1st grade. The plan was to take a year off from teaching then go...
    mommabrick5 mommabrick5 46-50, F 1 Response Apr 7

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    I have been diagnosed with POTS and misdiagnosed with various other things for 6 years now. I've learned that the most frustrating part about POTS is that it's an "invisible...
    LivingwithPOTS20 LivingwithPOTS20 18-21, F 1 Response Apr 8

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    When I was a child my parents knew something was different about me, and I was actually delayed in both speech and motor skills. (uncommon for aspies ;o it is more actually common...
    PerfectInsanity1988 PerfectInsanity1988 26-30, F 2 Responses 5 days ago

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    As a young teen I was just constantly thrown on pain killers for back and hip pain. It wasn't until Nov last year it was diagnosed as Fibromyalgia. My energy levels just...
    XanthiaJo XanthiaJo 22-25, F 1 Response 4 days ago

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