Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

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.

    Just found out my 11 year old son has Asperger's syndrome. I have suspected for a while, and the reason it went undiagnosed for so long is because he is so academically gifted. In...
    SoShellyBye SoShellyBye 41-45, F 1 Response 16 mins ago

    Your Response

    Cancel
    I don't know for sure, but I know it's not normal. How can you be so tired from nothing? And this condition is what makes me depressed. Like I can be perfectly normal and then...
    fcksociety fcksociety 22-25, F 3 hrs ago

    Your Response

    Cancel
    It's hard to really do anything.. When your a minor and have no family support... What's the point
    Norial Norial 13-15, F 1 Response 5 hrs ago

    Your Response

    Cancel
    Getting old fears me. True. I am shocked that i am no longer a teenager, but why is it like only my age increases? I feel like my mentality when i was a teenager is the same as i...
    blitzkrieg7 blitzkrieg7 22-25, F 3 Responses 12 hrs ago

    Your Response

    Cancel
    Its kind of funny, all my life. Every girl I was ever the least bit interested in...was always taken or unavailable. I tend to get stuck on one girl for a while and not really feel...
    Jason947 Jason947 18-21, M 1 Response 16 hrs ago

    Your Response

    Cancel
    Hi I am 17 and i was diagnosed January 2015 with POTS but we were almost certain for several months before. I am a junior in high school and I try not to let my condition keep me...
    mermaidmixi mermaidmixi 18-21, F 2 days ago

    Your Response

    Cancel
    im in the early stages of carpal tunnel syndrome in my right hand. i dont wear a brace yet. i go through pain and numbness in my fingers. its kinda weird.
    noaht43 noaht43 41-45, T 2 days ago

    Your Response

    Cancel
    Thick blood (also known as hypercoagulability, Antiphospholipids, and Hughes Syndrome) is a condition where the blood is more viscous (thicker and stickier) than normal. The...
    topcap2017 topcap2017 41-45, M 1 Response 3 days ago

    Your Response

    Cancel
    So I have a question. For me, when I am about to faint, I become really incoherent. I forget what I am talking about, I say off the wall things, and I can barely walk straight. It...
    imstrongerthanyouthink imstrongerthanyouthink 18-21, F 3 days ago

    Your Response

    Cancel
    There's the oldest There's the youngest There's the only boy And then there's me...
    DreamRiver DreamRiver 18-21, F 2 Responses 3 days ago

    Your Response

    Cancel
    Another bout has struck me down, looks like another few days of severe rest. Lucky me(!)
    ProjectExperienceNameUser ProjectExperienceNameUser 26-30, M 4 days ago

    Your Response

    Cancel
    I don't understand why they are subjecting me to this? They first suggested Turner Syndrome to me 2 years ago and referred me for yet more bloodwork on my hormones - the laugh of...
    LoneSouls LoneSouls 31-35, F 4 days ago

    Your Response

    Cancel
    i have several mental illnesses. i have been hospitalized many times and in rehabs. i take medication every day. i hate stigma and discrimination. it is wrong. i have...
    cosmosdrift cosmosdrift 31-35, F 1 Response 4 days ago

    Your Response

    Cancel
    Broken Heart Syndrome is real. SO happy I DiDN'T GET THAT! But I was HEARTBROKEN for MANY, MANY months. It took another guy to help me forget and keep me distracted but that dude...
    endlessl0ve endlessl0ve 26-30, F 2 Responses 5 days ago

    Your Response

    Cancel
    Any way to stop feeling fatigued? Anyone had any luck gaining energy back?
    WhiskeyT WhiskeyT 22-25, F 1 Response 6 days ago

    Your Response

    Cancel
    I'm only 4' 1. I have hypo pituitary syndrome. I stopped growing when I was about 11. I really hate it too.
    meneme2013 meneme2013 18-21, M 1 Response 6 days ago

    Your Response

    Cancel
    i'm 40 years old and have polands syndrome.i was always told that i just had a birth defect and that was it but finally a doctor diagnosed me.i was fine when i was younger but for...
    Brewdogg Brewdogg 36-40, M 1 Response a week ago

    Your Response

    Cancel
    Homeschooled my entire life I suck at Math Still don't have a driver's license (and haven't practice-driven since last summer) I missed out on pretty much everything cool in the 9...
    FluttershyLabeouf FluttershyLabeouf 18-21, M 1 Response a week ago

    Your Response

    Cancel
    I have the pais syndrome an intersex condition. I am a FTM/Libragender and I have bottom dysphoria and I am happy though that I'm intersex, though worried too.
    Yviroc Yviroc 22-25, T a week ago

    Your Response

    Cancel
    My Odd Sense Of Humor It was like spring today, the final day of January. Thanks to El Nino, the ground is not at all frozen, at least so far this year. Yesterday was gorgeous...
    Jackie69C Jackie69C 46-50, F a week ago

    Your Response

    Cancel
    Does anyone else experience a great feeling of anxiety and impending constant doom from this? Like something is terribly wrong...does anyone else feel this horrific panic deep in...
    myreality1 myreality1 36-40, M Jan 30

    Your Response

    Cancel
    My husband and I have been trying to get pregnant for the past year. Nothing. I have two beautiful twin daughters. Natural conception, first pregnancy. I finally went to see a...
    Butterflykiss707 Butterflykiss707 22-25, F Jan 30

    Your Response

    Cancel
    Is there anyone out there who has scleroderma of their organs? I now have it in my esophagus and lungs. Is this a death certainty. All I read is no cure and short life span. 3-5...
    jojosig jojosig 46-50, F Jan 28

    Your Response

    Cancel
    I have had scleroderma of the esophagus for @ years now. I have woken up on respirators more than once. Now I have been told its in my lungs. I have Lupus and CREST. I feel like I...
    jojosig jojosig 46-50, F Jan 28

    Your Response

    Cancel
    New low: as some of my friends may know, I was violently abused, raped and borderline tortured my my stepmother and stepsister following my fathers passing, and I left when I was...
    Nihl Nihl 18-21, M 1 Response Jan 26

    Your Response

    Cancel
    My 10yo son has a missing right pec muscle, but no other symptoms of Poland. He's very sporty and it has made no difference to what he can do, in fact he has developed a huge...
    TKDmum TKDmum 41-45, F Jan 26

    Your Response

    Cancel
    OPEN HEAVENS FELLOWSHIP DAILY DEVOTION DRAWING FROM THE WELLS OF SALVATION Isaiah 12:3 Therefore with joy shall ye draw water out of the wells of salvation. Joy is a spiritual...
    ganyoji ganyoji 22-25, F Jan 26

    Your Response

    Cancel
    I have had this for at least two years. Always had insomnia and higher than average need for sleep, but when I started drinking I began to sleep later to avoid the hangovers. Add...
    tophertime22 tophertime22 18-21, M Jan 25

    Your Response

    Cancel
    My name is Kristen Phelan and I'm a casting director working with Watercooler Casting. We are currently in development of a new TV project that is looking to document and bring...
    thekp129 thekp129 41-45, F Jan 25

    Your Response

    Cancel
    I was born with it. This disorder has really changed my life. All my symptoms of it: ----I tend to be socially anxious at times, not know what to say, I am not very good at...
    RainbowBlaze RainbowBlaze 13-15 2 Responses Jan 25

    Your Response

    Cancel
    It's quite interesting the response you get from people when you tell them that you write and you write ero fantasy and fiction (as wells as poetry and short stories). The...
    SapioT SapioT 41-45, M 2 Responses Jan 24

    Your Response

    Cancel
    I have strong family values... Although I don't know for the life of me where they come from. Family values WERE NOT instilled in me... Rather, I was taught the opposite. My...
    StarLily71 StarLily71 41-45, F Jan 23

    Your Response

    Cancel
    Update on my pica syndrome. I have been clean for 6 months now and it's was very difficult for the first couple of months, but now the only time I crave uneatable things is when it...
    666x1 666x1 16-17, F Jan 23

    Your Response

    Cancel
    Hello! I have Goldenhar but unfortunately my parents were told I had congenital atresia and microtia. After 14 surgeries as a baby, child, teenager and recently as an adult, I can...
    khaireng khaireng 36-40, F Jan 22

    Your Response

    Cancel
    You know it doesn't matter if your a straight A student, never cause any problems, on a scholarship offering/grand champion team.... Your still less wanted... And can't get what...
    Norial Norial 13-15, F Jan 22

    Your Response

    Cancel
    Proud and I wouldn't have it any other way. I love being a black woman and apart of a people that are so strong and resilient. That have rich history even after all of the troubles...
    Tutu7 Tutu7 61-65, F 12 Responses Jan 21

    Your Response

    Cancel
    Ive had pica for about 8 years but it's been on and off. It started when I was 8.I smelled toilet paper in the cupboard and was immediately attracted to it.It smelt so amazing and...
    Savannah98 Savannah98 16-17, F 1 Response Jan 20

    Your Response

    Cancel
    I have rumination syndrome, except it's not exactly 100% rumination syndrome. It's not just vomiting, I have nausea also, which makes everything worse. I have to miss school all...
    madeleine4 madeleine4 13-15, F 1 Response Jan 20

    Your Response

    Cancel
    Hi there, I want to share an experience however it keeps getting deleted! It's quite long so yeh. Just wondering, anyone here from Sydney ?
    mrharticuz mrharticuz 22-25, M 2 Responses Jan 19

    Your Response

    Cancel
    I would love to hear from someone who has had a similar story and a positive outcome! My doctor was not really forthcoming with information, and to be fair, I had so many...
    3Es1A 3Es1A 31-35, F Jan 19

    Your Response

    Cancel