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I Have Muckle-wells Syndrome

A Muckle-Wells Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Muckle-Wells Syndrome. You're not alone.

    Hello: My daughter has Parkes Weber Syndrome. I'm wondering if anyone in this group is from Ontario?
    Momofgirl Momofgirl 41-45, F Feb 5

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    One year ago is when I started getting sick. It's started out as maybe an hour in the morning I would feel extremely nauseous and most of the time I would get sick and then go on...
    kateyrose98 kateyrose98 16-17, F Feb 9

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    Dear CFS: **** you! I hate not being able to think clearly. I hate not being able to play with my kids Saturday *and* Sunday. Instead, I have to pick one day and then use the...
    LookingForIt987 LookingForIt987 41-45, M 2 Responses Feb 11

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    Hi, I'm 21. I slipped a disc in December 2014. I had CES symptoms for 2 weeks before having my disc removed as I was on a cruise ship. I guess I'm lucky as I can walk normally with...
    sdavis313 sdavis313 18-21, F 1 Response Feb 15

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    Hi everyone! So I'll be posting my full story later but just wanted to do a short version. I'm 17 and was diagnosed in October 2014, they found out it was BCS after only being...
    Abbyrk Abbyrk 16-17, F 1 Response Feb 15

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    I can't say 100% that I have this (just 98%) I wish I knew how to get better because I also have pseudotumor cerebri and the two are going in circles with each other right now...
    lu7998 lu7998 31-35, F Feb 16

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    Hi I'm 24 years old and currently being diagnosed with pts. 5 months ago I had my first symptom which came out of no where and was severe! I have had sooo many tests as you would...
    megzeee megzeee 22-25, F 1 Response Feb 18

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    As an Aspie, I get very tired having to socialize and talk to people. I'm often accused of being aloof, standoffish, or downright rude. It's not my intention to be mean or...
    Sorgun Sorgun 26-30, M 3 Responses Feb 21

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    I was born weighing two pounds and couldn't eat on my own. I wasn't eating food of any kind and was diagnosed with RSS when i was an infant. At first i was put on a N G tube (a...
    RTKDcarmichael1stdegree RTKDcarmichael1stdegree 18-21, M 1 Response a week ago

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    Have any of you kept up with news recently? Apparently, there are studies now that show this is a disease and the medical community will start treating it as a disease. Looks like...
    awesomesauce2 awesomesauce2 22-25, M 3 Responses a week ago

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    I don't know if because of the other medications I HAVE to take or what but I use Restasis every day twice a day like the frickin commercial says. I also take Fish Oil and...
    steverick steverick 56-60, M 1 Response 1 day ago

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    It's so tough to get exercise. I want to exercise so much...but I can't because it hurts and my joints pop every time i do:(
    Enpfor12 Enpfor12 18-21, F Feb 10

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    i am aspie and i am proud of it. it makes me who i am and ucan all say like it makes some things i know i was diagnosed last year with this and high functioning augism and this is...
    prodemonz prodemonz 13-15, M 3 Responses Feb 24

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    Indeedly--makes effective communication a ***** I gotta say. And then there's the difficulty to quickly adapt, and sometimes people say stuff in a way that you just don't get and...
    Cryx Cryx 16-17, F 1 Response 4 days ago

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    My sister does, and I'm that sibling. I have asperger's syndrome, a form of high-functioning autism. When I was younger I would get angry at the littlest things. I remember...
    ftmFreddy ftmFreddy 18-21, T 1 Response Feb 9

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    Don't give up; there is hope. I'm 19 and when I was 16, I got my first symptoms of rumination syndrome. Like a lot of others, I thought it was a 24 hour sick bug but it just...
    alexxblanch alexxblanch 18-21, F 6 hrs ago

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    i first found out i have turner syndrome when i was a babe my ma discovered i was on injection to help my growth i attend hospital evey six months but they have me in a adults...
    Atale Atale 18-21, F 19 hrs ago

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    its hard living with this condition im an eighteen year old girl living in Ireland i was a babe when my mother found out i didnt know anything about it i was in hostiple most of...
    Atale Atale 18-21, F 3 Responses 19 hrs ago

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    Hi call me Sean. I'm 21 years of age and I have Poland syndrome. I am missing my left pec muscle and it haunts me practically everyday. I feel as if I have I've become alittle bit...
    Life1sinteresting Life1sinteresting 18-21, M 1 Response 4 days ago

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    Today my husbands uncle passed away . He was a good man , always there for us after my husbands father passed away . He was a human so wasnt perfect , but he was honest and kind...
    yak3 yak3 41-45, F 8 Responses Feb 14

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    My insta: wellshitsicles 🙀🙀🙀
    mimimy mimimy 13-15, F Feb 14

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    Quite a few, actually. Let's see: Velo Cardio Facial Syndrome Asperger's syndrome Depression Obsessive Compulsive Disorder That's me.
    ftmFreddy ftmFreddy 18-21, T 5 Responses Feb 9

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    The ever present question, are we being manipulated? If you say, well yeah, duh. Then you ask yourself the next question, who is manipulating us? Welcome to the mind of all tin...
    everydayisagoodone everydayisagoodone 31-35 2 Responses Feb 13

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    Hi I am a 20 year old girl in the uk. I was diagnosed with mosaic turners when I was born but I've never even thought about the condition that I have, it's never really effected me...
    MissLisac MissLisac 18-21, F 2 Responses 5 days ago

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    just wondering about others experiences with POTS syndrome. I have lost all strength in my legs and im in a nursing home. Therapist says ill be in a wheelchair for a month. was in...
    Jzimo Jzimo 22-25, M 4 days ago

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    Does anybody living in the uk have pots?
    emilysorrell emilysorrell 16-17, F Feb 7

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    Hello. I have been experiencing symptoms for 6 months now and I was very recently diagnosed with Rumination Syndrome. I am on 20mg of Amnitriptolyn to help cure but there hasn't...
    minmouse614 minmouse614 26-30, F 1 Response Feb 9

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    I've missed 17 days this semester already and am very behind in school. Does anyone else have a really hard time keeping up? My mom says I can start homeschooling but not until I...
    TavynKeylee TavynKeylee 13-15 2 Responses Feb 10

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    I have suffered with pica since I was a child. I eat drywall and I need to stop! now! I've tried everything, I take supplements, I try to find something less toxic to meet my needs...
    lilacgarden2015 lilacgarden2015 22-25, F Feb 12

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    I got into a relationship with a man I thought was my soulmate, it happened online and he lived in a different state. He flew over twice and I flew to see him once. For 6 months...
    CosmicPrincess CosmicPrincess 26-30, F 1 Response Feb 14

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    After 5 years of battling with POTS I have finally managed to stay healthy long enough that my doctor approved me for a volunteering program in South Africa! After years of wishing...
    haileybb haileybb 18-21, F 1 Response Feb 14

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    HAVE ANYBODY EVERY STOPPED THIS COMPLETELY? ????
    toiletpapereatter toiletpapereatter 31-35, F Feb 19

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    I am 31 and my husband is 31 as well?we are a gay couple? for the last 7 years My husband has been aware of his Aspergers Diagnosis and I, Have done a very extensive amount of...
    KnightOfTheMadHatter KnightOfTheMadHatter 31-35, M Feb 22

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    Hello. I am a 23 year old male, and this is my story that I want people to know. It all began back in my old home. My parents were great and wonderful parents to the eyes of the...
    familymaynotbeforever91 familymaynotbeforever91 22-25, M 3 Responses a week ago

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    im self diagnosed i truly feel that i have it
    TomboyBeth TomboyBeth 13-15, F 1 Response 3 days ago

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    I'm looking for a little insight on Pica. I myself do not believe I have Pica but I believe my three year-old daughter does. Literally EVERYTHING she touches she tries to eat and...
    kasirae3192 kasirae3192 22-25, F 1 Response 2 days ago

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    I have just ran across DSPS today in researching and trying to find out what exactly has been wrong with me for most of my life. I've classified myself as a night owl since I was...
    CrowWoman CrowWoman 51-55, F 1 Response 2 days ago

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    I work in customer service (phone and email). I have been told before that I put too much pressure on myself, and I agree that I do. But I just don't know how NOT to. Well...
    enigma19020 enigma19020 46-50, M 1 day ago

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    anyone with turner sydrome chat me please
    Atale Atale 18-21, F 18 hrs ago

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    I hatr it when I tell people I've been up for an obscenely long time and they ask me if I tried to sleep. No, I want to be a miserable zombie all day. Or when people say so quick...
    Ztun7856 Ztun7856 16-17, F 1 Response 18 hrs ago

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    My 13yr old daughter is an aspie .It runs on my husband's side of our family. He himself is an aspie so is his 17yr old son. Our 11yr old son has autism. It primarily has affected...
    Allie9273 Allie9273 41-45, F Feb 6

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