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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.

    So about three weeks ago I got this odd pain that went from my neck into my left scapula area. I went to the chiropractor and had an adjustment. Felt somewhat better for just a...
    ornursetab ornursetab 41-45, F 1 Response Sep 21

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    I have Asperger's syndrome and so I'm quite socially awkward. People just never take me seriously or think I'm a freak. I'm almost 17 now and I'm really worried that I will never...
    vivi9298 vivi9298 16-17, F 5 Responses Oct 6

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    12 months ago I got very serious pancreatitis caused by a vary rare hereditary condition that I have since found out I have called familial chylomicronemia syndrome or (FCS). (FCS...
    frog2000 frog2000 26-30, F Sep 27

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    ...and I like it. What a crazy thing to happen right as I'm falling asleep, and sometimes it's SO LOUD! Sometimes it's my name, of all things. If anyone reads this and doesn't know...
    incorporealist incorporealist 36-40, M 1 Response Oct 9

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    Asperger’s Syndrome From another planet to earth, I look around at all the people that pile on earth’s grounds. Questioning their social norms, studying their eye contact...
    kelseytoby1337 kelseytoby1337 16-17 3 Responses Oct 11

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    People judge me a lot when they find out that I have Asperger's.
    AveryWeinstein AveryWeinstein 16-17, F Sep 21

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    I think I have Zollinger because it now takes me a LOT of Rabeprazole to suppress GERD symptoms
    RegHandford RegHandford 66-70, M 1 Response Sep 22

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    Apparently I have high functioning asbergers but low functioning autism..??? Confused!
    CheeseBomb500 CheeseBomb500 16-17, M 1 Response Sep 26

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    My sister has recently started to have severe vomiting that last up to 3-4 days, for two months. It correlates with her period. This time it was so bad she had to go to the ER...
    MissNinaBee MissNinaBee 31-35, F Sep 26

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    The worse thing is the paralysis and not being able to be expressive anymore with my face. I used to have a lovely smile and now it's gone. I hope that it's temporary...It's been...
    istajam istajam 36-40, F 2 Responses Sep 30

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    To be exact, this is the story. Doctors say I have symptoms of many but the closest one they could come up with is this because of me being born with no outer ears. Big neck. I...
    BigRalphie74 BigRalphie74 36-40, M 1 Response Oct 3

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    i have never heard of this disease
    mstud17 mstud17 22-25, F 1 Response Oct 4

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    And thanks to screw up all around, I've been without my medicine for the last several days, and have no idea when my refill will arrive. So, I'm feeling really antisocial right...
    OggggO OggggO 26-30, M 2 Responses Oct 6

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    I'm so over it! Getting constant cramps every day and sometimes it hurts so much I have to sit down and nearly cry. Tried going on the pill and it made the pain worse. I hardly...
    wannaplay122 wannaplay122 18-21, F 2 Responses Oct 9

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    I was diagnosed at 14 with PCOS and when the nurse told me, I just broke down and cried.. I semi expected to get it but I didn't want my fears to be true, my mum had it and a...
    BennetWitch BennetWitch 18-21, F 1 Response Oct 11

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    I haven't had a period in 14 months and it hurts so bad :(
    XxForeverBlueXx XxForeverBlueXx 18-21, F 3 days ago

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    I have pcos and I'm SO upset about it. I'm 20 years old & I ready wanna have kids cause I'm scared it will take me forever to get pregnant anyways! I'm not overweight but I'm so...
    lovebarbiex0 lovebarbiex0 18-21, F 1 Response Sep 22

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    hello need urgent help on cauda equina i have l4 l5 disc central disc protusion from last two years but recently i have a lot of tingling in my testicle area and from last two...
    karansapra karansapra 31-35, M Oct 8

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    My Struggle I have an extended form of Gluten and Casein intolerance. Corn, wheat, dairy, barley, flax, oats, quinoa, eggs, grapes, and tomatoes all trigger allergic reactions in...
    Tucker66 Tucker66 16-17 6 days ago

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    I have a genetic collagen disorder, otherwise known as EDS. Not only do I have the hypermobility and classic types which cause fragile and stretchy body tissues, poor wound healing...
    KKookieMonster KKookieMonster 18-21, F 8 hrs ago

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    And today has been the most miserable day. I've never had it throughout the day before only at night, but the three hour drive back home I felt it the whole time. Trying a new...
    amcgarity amcgarity 22-25 Sep 21

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    The most frustrating thing is knowing that you know others don't. Followed by knowing they understand what you don't. Somedays I tire of faking emotion to be kind. I just wish...
    silkyavi silkyavi 31-35, M 1 Response Sep 22

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    Missing out on so much school baffled my parents. They did not know what was making me so sick until my diagnosis. Battling the pain and exhaustion has been difficult due to the...
    chlo3ann3 chlo3ann3 13-15, F 2 Responses Oct 8

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    I always wondered what was wrong with me, since I was quite young. I wondered why I was so different from all of the other kids my age and why everyone thought I was strange. I...
    CreativeSpark CreativeSpark 18-21, F Oct 13

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    It is a burden, I was picked on frequently at school and I found it difficult to make friends(besides those who also suffer from disabilities). I find this a barrier to finding...
    T3chmupp3t T3chmupp3t 18-21, M 1 Response 6 days ago

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    Every doctors and psychologist says it even my teacher but I know it's bullshit cuz I go out like every week and I always talk to random people. I can sit on the train station and...
    breastmilklover99 breastmilklover99 70+, M 4 days ago

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    It's hell. I can't sleep for hours
    xxalicerosexx xxalicerosexx 16-17, F 1 Response 3 days ago

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    I'm so scared my husband will leave me to have children. He wants children, loves them, idolises them. I think kids are cute but I'm much rather enjoying seeing, learning and...
    CorruptedAngel CorruptedAngel 22-25, F Oct 4

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    I am Janice, a 77 year old female and had GBS 25 years ago. I was at UMMC then rehab for 2 months. Over the years I felt better but had some residual stuff, but about 8 months ago...
    jlcaputi jlcaputi 70+, F Oct 3

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    My twin brother has Down syndrome, along with many other problems, he can't talk clear, only we can understand what he's saying, I've heard people call him ugly, fat.. Short...
    Bflyboo14 Bflyboo14 13-15, F 2 Responses Sep 24

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    When I was 12 years old I started having extreme headaches. My mom took me to the neurologist and they said I would grow out of them and didn't take my pain seriously. Later, it...
    WynonnaMarye WynonnaMarye 18-21, F Sep 25

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    My mother was diagnosed with Guillian Barre Syndrome this past Aug. Since then she has lost all function from the neck down, including her mouth. She has been on a ventilator and...
    anthonykoryn anthonykoryn 36-40, F Oct 1

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    I am a mother of 4 children. 2 children wit my first husband and 2 with my second husband. My 16 year old daughter had been complaining of pain and swelling in her thumb for a...
    ratgirl73 ratgirl73 41-45, F 2 Responses Oct 2

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    I found out when I was 18 that I have Turner Syndrome. I have recently started really thinking about the impact on my life and really need someone to talk to
    crteach crteach 31-35, F 5 days ago

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    I was diagnosed with gitelman syndrome back when I was around 16 yrs old (just turned 25). It took a really long time to actually get diagnosed. It was a very hard process. I...
    pinay89 pinay89 22-25, F 4 days ago

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    I am. 45 years old, throughout my childhood, I would have dizzy spells and blackouts, doctors said I was making it up for attention. At 18, I had a serious attack, heart began...
    i1u4eel2 i1u4eel2 41-45, M Sep 21

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    I might have to be homeschooled. My quality of life is gone as of now.
    december789 december789 16-17, F 1 Response Sep 22

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    I am married for 4.5 years, i met my husband in the other side of the world... i moved whit my two kids to him (this is my second marriage)... when we started living together i...
    TikaBuendia TikaBuendia 36-40, F 1 Response Sep 24

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    Three times, to be exact. I am not the most valuable employee here but I do what I am asked to do until the job is completed. I don't take kindly to someone with 'little man...
    iamokaynow iamokaynow 31-35, M Sep 25

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    September 2014: I am 29 years old and to celebrate my birthday I went to spa with my girlfriend. Everything was smooth until the next morning. I woke up Sunday with a splitting...
    santrim santrim 26-30, F 1 Response Sep 25

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    When I read about women in relationships with Aspies, I see my own life and relationship reflected so clearly in their stories. But I think my ADHD is making it even worse. My...
    TiffanyPerkins TiffanyPerkins 36-40, F 2 Responses Sep 30

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    Doctors don't have all the answers. It's all about learning. I have been diagnosed with Stiff Person Syndrome SPS, autoimmune issue. Anyways based on my research, cleaned up my...
    Mscrabtree Mscrabtree 51-55, F 2 Responses Sep 30

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    Has anyone changed their diet aside from salt intake and hydrating with lots of liquids? Wondering if that would help as well? Also has anyone had good experiences with pindolol...
    Grace1549 Grace1549 31-35, F 1 Response Oct 2

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    It makes me so sad to write this, but I think it's over. I can't continue in a marriage that is so one-sided and hurtful. I want so badly to keep my family together, but trying to...
    Elasticgirl Elasticgirl 36-40, F Oct 5

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    I am a Misophone with Asperger's Syndrome, Avoidant Personality Disorder, and Gender Dysphoria. These three conditions in combination make my life a living hell to live, but I try...
    DestinyEvelyn DestinyEvelyn 18-21, T Oct 7

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    Turns out physical turrets syndrome isnt a legitimate sexual harassment defense strategy...or even a thing
    AntonioV AntonioV 46-50, M 2 Responses Oct 9

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    So I'm not sure if this is a side effect of Chronic Migraines but I've been experiencing some pretty debilitating dizziness for the past week. So I'd like some incite from other...
    WynonnaMarye WynonnaMarye 18-21, F 3 days ago