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I Have Muenke Syndrome

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

    Hello! I'm Kristina, I'm 18 years old. In February this year I was diagnosed Swyer syndrome. Although I'm trying to get used to require me to help people who know I'm going through...
    kika96 kika96 18-21, F 2 Responses Jul 8

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    I have been diagnosed with female Aspergers
    prettybum prettybum 18-21, F 1 Response Jul 7

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    I don't know if this Aspergers or not. I don't know if I'm over reacting or I what. I have a friend I used to live with. She had to go home and plans were made for me to go back...
    Sakaratte Sakaratte 26-30, M Jul 12

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    I've always had really bad craving for sponge. I never eat it because my friend went to the hospital for exactly the same reasons, but I can stop the urge to eat it by smelling the...
    meganbxiley meganbxiley 16-17, F 1 Response Jul 14

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    I was diagnosed when I was about 9, and it apparently makes it difficult for me to socialize. While it is true that I have an extreme difficulty, if not total inability, to make...
    Varof Varof 18-21, M 2 Responses Jul 20

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    Well I had my first unplanned trip to the hospital on Saturday. Basically the heart murmur I have had for awhile finally did something bad and I ended up being wheeled into an...
    MattsShadow MattsShadow 18-21, M Jul 21

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    This is a follow up for my story "what doesn't kill you makes you stronger" My name is grace. I am now 16 years old and I just got my correction surgery last week! I had a muscle...
    marinagrace marinagrace 13-15, F 1 Response Jul 22

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    It started with me getting these high pitch squeals. Like a surge up my spine and unless I concentrated hard, it would come out. Usually when I was most peaceful it would suddenly...
    Skywalker1979 Skywalker1979 31-35, M 1 Response Jul 22

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    I have had POTS as a definite diagnosis for two years now, however I have had it for many years. I am 18 now, an have recently graduated May 24, 2014. During my junior year of...
    TheForestChild TheForestChild 18-21, F 1 Response 2 days ago

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    Anybody who has POTS have photophobia (sensitivity to light)? Mine is really bad and worsening. I don't know if it's another symptom of POTS or should I get checked out
    december789 december789 16-17, F 2 Responses 2 days ago

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    okay, I've never told anyone about this and I'm only 15 for a few years I've had an excessive habit of eating graphite, rocks, baby power, sand and charcoal. I literally break...
    aarlert aarlert 13-15, F 1 Response Jul 7

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    LOL!! MUST READ!! Pica : is most common for 2-3 year olds but I'm 10 so I can't stop eating paper or my crazy loom bands! I've been biting my brothers arm sometimes I bit a little...
    bela5562 bela5562 13-15, F Jul 7

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    Www.potsisthepits.com I promise my blog will inspire And enlighten those with pots!
    cassidybute cassidybute 18-21, F Jul 11

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    Hello, My dad was recently diagnosed with melas. My family and I are struggling to support him and ourselves. Is there anyone out there (particularly in Australia) that wants to...
    hellokat33 hellokat33 18-21, F Jul 14

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    It's bad, real bad I think. It started two years ago when I walked home from school with my friend and we passed a construction sight with piles of dirt and rocks. There was this...
    BlackPaint0000 BlackPaint0000 16-17, F 1 Response Jul 16

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    Do males with AS find confrontation from their girlfriends extremely challenging? Do you stop talking to her for weeks even if you suspect you are wrong?
    pingpinky pingpinky 31-35, F 2 Responses 4 days ago

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    OPEN COPPER,HER NAME IS -NIGHT NIGHT- LARGE SHARON,FULL GARDEN,CARTER CO. KENTUCKY,CALL:JOHN 1-606-474-4770,PENNIES PICKED, PRAISE FOLDINGUNFOLDING,I NEED MY S'MORES MADE WELL,OR...
    JEM404 JEM404 41-45, M 1 Response 3 days ago

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    i too crave a lot for slate pencils . is thr any remedy to get rid of this?
    CuteCat21 CuteCat21 18-21, F 2 days ago

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    I have asbergers syndrome and I always feel like a outcast.I was bullied in middle school,because I had no friends.I had to get diagnosed 2 times,because teachers didn't believe...
    AuroraSunny AuroraSunny 16-17, F Jul 19

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    For about a year I've been considering divorcing my wife of nearly 8 years. Our relationship has never been great. We are great friends, but horrible lovers/spouses. We do things...
    randomtiger45 randomtiger45 31-35, M 1 Response Jul 1

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    My daughter is a little over one year old. ( I don't like talking in months)She has Down Syndrome. I don't treat her differently from my other kids. Her needs are a little...
    Kryzta Kryzta 26-30, F 1 Response Jul 8

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    My husband has Asperger's Syndrome. I am having a difficult time with our marriage. We have been married two years. He is a good provider and has good traits, such as being...
    Solfeggio Solfeggio 36-40, F 4 Responses Jul 11

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    Barth syndromeFewer than 200 living males are known worldwide with this disease. Symptoms vary largely between patients, from life threatening to non-existant. No patient has all...
    Uncertain153 Uncertain153 26-30, M 1 Response a week ago

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    My husband and I were in a motorcycle wreck in Feb. (2 days after our wedding in India). I'm interested in getting to know other people dealing with Compartment Syndrome, in hopes...
    JenniferLakhlani JenniferLakhlani 36-40, F Jul 13

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    I learned only a few years ago that I have Asperger's Syndrome and am clumsy as well as frequently speak very wierdly sometimes, and am socially awkward. I am also narrow minded in...
    Fenrirfenn Fenrirfenn 18-21, M 4 Responses Jul 3

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    In 2011 I gave birth healthy beautiful baby. She was perfect and I loved her from the first time I saw her beautiful curly mop on her head and that chubby little face. As a mother...
    SweetAlibis SweetAlibis 26-30, F Jul 8

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    I have Russell silver syndrome. It has given me health problems,I am way under the average weight for a normal 15yr old, I am 4'9 and will no longer grow.
    EvaJL EvaJL 13-15, F Jul 13

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    Over a year ago I was diagnosed with Postural Orthostatic Tachycardia Syndrome. I've battled high school with this non curable disease, but I now I graduated and it is time for me...
    heyycutie16 heyycutie16 18-21, F 3 Responses Jul 13

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    I've just found out today I have Carpal Tunnel Syndrome .. it's hard for me to participate in Color Guard ..and soon I feel like I would have to stop ..bc the pain is crucial
    lynn1497 lynn1497 16-17, F a week ago

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    UK SUFFERERS - PLEASE GET IN CONTACT! So, I've never really wanted to write my story. Not because I am afraid or ashamed, but because I am so bored of talking about it, it makes...
    scharx scharx 18-21 Jul 1

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    UK SUFFERERS - PLEASE GET IN CONTACT! So, I've never really wanted to write my story. Not because I am afraid or ashamed, but because I am so bored of talking about it, it makes...
    scharx scharx 18-21 1 Response Jul 1

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    NOT THE DRUG The syndrome Anybody on here who has it to?
    theweirdestofthemall theweirdestofthemall 13-15, F Jul 8

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    My nightmare was it was Gore In it I had a sister who was with down syndrome . we are in the house , the bunkbed room off from that was a room that was supposed to be of a...
    Organia Organia 46-50, F 1 day ago

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    It has been seven weeks since I woke with severe ear pain. I had a few weeks of dizziness and what seem to feel like water in my ear before that. I went to ER later that day...
    ksrooney ksrooney 56-60, F Jul 1

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    I have never heard of it but apparently its an obsessive disorder and people with borderline personality and anxiety disorder have it. I don't know how i am going to stop because i...
    Gentleandlovingsoul Gentleandlovingsoul 36-40, F Jul 1

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    I've always suffered from SSS and Misophonia since I was very young. Recently it's gotten very difficult for me. I have been getting over whelmed or over come with feelings and...
    Danicakes9 Danicakes9 13-15, F Jul 1

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    I'm the second child of the family. I have an older brother who is a year older than me & a younger sister 8 1/2 yrs. younger than me. I can't say my parents are bad but I've been...
    Cfil26 Cfil26 18-21, F 1 Response Jul 1

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    So glad to have found this. The only other POTS groups I am a part of are on Facebook and I don't really want my friends knowing how much I struggle. Feeling comfort in the...
    Zebra223 Zebra223 26-30, F 1 Response Jul 3

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    I had to have a hysterectomy maybe 3-4 years ago. I have a hard time even now, seeing women who are pregnant with children. I never had that chance. Always had fibrous tumors in my...
    mrsklemzak mrsklemzak 36-40, F 2 Responses Jul 3

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    Hey fellow POTSies! Just out of curiosity, what does everyone do as far as work/job/careers if anything? And if you are in school, what activities/sports/etc are you involved in...
    Ktglisson87 Ktglisson87 26-30, F 3 Responses Jul 3

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    I want to express my frustration without offending anyone. I get very down on myself when I read about other POTSies who are athletes or can run. I am extremely happy for them that...
    Zebra223 Zebra223 26-30, F 2 Responses Jul 3

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    My wife and I had an abortion because our son had Down syndrome. It is something I have regretted from the day of the termination and although it was a joint decision it was not...
    scottmarg scottmarg 26-30, M 5 Responses Jul 3

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    Update: Divorce. I hope you're all doing well, and wanted to give you an update, since we've all considered divorcing our asp. spouse (or many of us at least). I got lucky in a...
    Mannon Mannon 36-40 3 Responses Jul 4

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    Have any of you tried to go gluten free cuz of pots?? I just recently did and wondered what other people's experience has been with it?
    Ktglisson87 Ktglisson87 26-30, F 1 Response Jul 4

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    In October I had an abortion. I've gone through the stages of grief, though it was painful I understood it and so did others. But then there were the emotions and thoughts that I...
    DizzieDazie DizzieDazie 18-21, F Jul 5

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    I have had POTS since the last two months of my eighth grade year. It took until December for my illness to finally be diagnosed as POTS. But even though I had a diagnoses I still...
    POTSforever POTSforever 16-17, F 1 Response Jul 5

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    I have Oral Allergy Syndrome
    n0ceur n0ceur 18-21, F Jul 7