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I Have Moyamoya Disease

Moyamoya Disease anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Moyamoya Disease. You're not alone. 8 People

    My Daughter

    I don't actually have Moyamoya disease, however, I am a Mom to an 18 year old girl who does.  My daughter suffered from a major stroke in July, and is recovering beautifully.  I had no idea she had this disease, how could I really?  It's not like you take your baby...
    BearsRule BearsRule 36-40, F 5 Responses Jan 20, 2010

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    I Have Moyamoya...

    On Sunday, November 1, 2009 I woke up with a slightly heavy left arm and slightly clumsy fingers. I could still use and move them, but it just took a little extra effort. I had no pain, but something just wasn't right. After being up a few hours I decided to go take a...
    momma2miracles momma2miracles 36-40, F 12 Responses Jun 14, 2010

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    Moyamoya Was My Christmas Present

    December 24, 2010 is a day I shall never forget.  While out doing my last minute Christmas shopping I found myself unable to talk.  I could not talk to the store clerk I started to have to write things down.  Instead of going to the emergency room immediately.  I sent a...
    needitsold needitsold 36-40 2 Responses Mar 11, 2011

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    Related Experiences

    Developed a heart disease and had to stop playing softball which dropped my scholarship to college. If I don't get the expensive surgery I'll die from heart failure or drowning in...
    CaliArs CaliArs 18-21, F Dec 13

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    Was diagnosed with Hashi's two months ago after two years of doctor after doctor, misdiagnoses and mismanaged meds. Extreme fatigue, dizziness, headaches, brain fog, exhaustion...
    craigrhodes craigrhodes 46-50 Dec 15

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    As much as I've tried not to let this effect me and define who I am, I've been out of work all year due to this illness, had 2 weeks training for a new job and my illness has...
    deejay2605 deejay2605 22-25, M 1 Response Dec 17

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    visual says celiac. blood test tags says celiac. biopsy is inconclusive. hmmmm dr says 95percent sure celiac. she says she never came across this before.
    girlawaken girlawaken 41-45, F 1 Response 3 days ago

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    Well where to start? I guess it's always better to just put it out there....I was recent tly told I have liver disease and they think it's acute and that means it showed up without...
    Squeekarose Squeekarose 31-35, F 1 Response a week ago

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    well hello I am having the wide excision surgery at 11am tomorrow. I have been dealing with this hs for sometime. MY first slice and drainage happened the day of history 9/11. I...
    hopeful72 hopeful72 41-45, F Dec 10

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    I wanted to share this. Envita Publishes Important Chronic Lyme Disease Treatment Study SCOTTSDALE, AZ--(Marketwired - December 16, 2014) - A revealing new study on chronic Lyme...
    mynameisjeff28 mynameisjeff28 26-30, M Dec 18

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    Thomas Marvelli is a popular Ophthalmologist, working at Marvel Eye Center. He is M.D. from Loyola University Stritch School of Medicine, Maywood, IL. He loves his job as a...
    ryangibello ryangibello 61-65, M Dec 5

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    Until you walk a mile in my shoes, it will be very easy to say "it's all in your head!" "You need to learn to cope!" Or my favorite, "is this even a real thing?" Misophonia...
    Annaelaine Annaelaine 13-15, F 1 Response Dec 7

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    I lost my dad on November 22. I watched a big strong healthy man become over powered by Alzheimer's and dementia. I watched these diseases slowly destroy him. When he died he was...
    abluerose abluerose 41-45, F 1 Response Dec 3

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    A few years ago, I moved from the east coast of the United States to the southwest to go back to university after taking a year long break from school, and I didn't know a single...
    uglyhands uglyhands 22-25, F Dec 4

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    Herbs Solutions By Nature is just the right destination for all those who have been looking for a herbal cure to their relevant disease. We are acquainted with the fact that herbal...
    herbsolutions herbsolutions 22-25, F Dec 3

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    Hello I'm MICHELLE buff by name, I'm giving a testimony about Dr. LAMANO the great Herbalist, he has the cure to all manner of diseases, he cured my herpes disease, though I went...
    Belaluv22 Belaluv22 22-25, F Dec 3

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    Hello I'm MICHELLE buff by name, I'm giving a testimony about Dr. LAMANO the great Herbalist, he has the cure to all manner of diseases, he cured my herpes disease, though I went...
    Belaluv22 Belaluv22 22-25, F Dec 3

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    Hello I'm MICHELLE buff by name, I'm giving a testimony about Dr. LAMANO the great Herbalist, he has the cure to all manner of diseases, he cured my herpes disease, though I went...
    Belaluv22 Belaluv22 22-25, F Dec 3

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    OCD is when: Numbers remind you of the worst moments of your life. You can't walk into that room because you have a bad feeling. You can't hurt that stuffed animal because it has...
    simplyOCD simplyOCD 16-17, F 1 Response Dec 6

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    I have crohn's disease . I was diagnosed in 2003 , I would say I'm a very strong person with all the pain I go through . but it seems ever since I had my daughter 7 years ago I've...
    queenbee03 queenbee03 22-25, F Dec 10

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    my name is Minnie my diagnose date is 12/2010. I'm 3rd stage emphysema (4th stage-end stage). I did well at first, but the disease is progressive. The next thing I know is I am...
    einnim einnim 61-65, F 1 Response 2 days ago

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    My mother may not make it through the night. But she might. I am unsure what I should do. She's trying to walk around...I am trying to stay out of the nurse's way as they try ti...
    Myzery Myzery 31-35, F 2 Responses Nov 29

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    My wife( 36, a twin, living in NZ), has MELAS. Hearing loss declined between 2007-2012. Had first grand mal seizures in 2012, diagnosed with mitochondrial disease/MELAS. Sadly had...
    Richeste Richeste 36-40, M Nov 29

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    I have been pulling for about 6 years, and I am now in college. I have pulled just about every type of hair on my body. There have been some periods of time where the pulling stops...
    uglicorn uglicorn 18-21 3 Responses Nov 29

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    My daughter has BCS. She's 6yrs old now. She was diagnosed when she was 18 months old. Her body was shunting itself when I was pregnant with her. She's currently on Coumadin. She...
    annagracesmom annagracesmom 41-45, F Nov 30

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    I had an argument with my dad today. Made me want to kill myself. It it weren't for my brother I would've probably gone through with it. But he got in my car and managed to calm me...
    nuttyduck nuttyduck 18-21, F 3 Responses Nov 30

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    I told my story last September at EP Link but at that time I was still taking 20mg/day of prednisone and was still not in good shape. I was pain-free soon after and by December I...
    marty39 marty39 70+, M 3 Responses Nov 30

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    Hello everyone! I am a 28 year old who has struggled with alopecia since I was 18 years old.... I put it aside for the most part of my high school years.. thinking it was all the...
    hstutz hstutz 26-30, F 2 Responses Dec 1

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    I was dianogsed with RA when I was 18 months old, so it’s been a long time as I am now 19. I was diagnosed super fast and refered to a pediatric rheumatologist at the Royal...
    wayoflife95 wayoflife95 18-21, F 1 Response Dec 3

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    I hate people. its better to be alone. chat online. people expect to much from you. I like it this way. I'm grateful for my social anxiety. people should stop messaging me saying...
    tobethin666 tobethin666 18-21, F 10 Responses Dec 3

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    It is really sad watching someone you've always known as strong and healthy to gradually get so dependant .. My mothers ms went out of remission 6 years ago . I am 22 now & it's...
    plaine plaine 22-25, F 1 Response Dec 5

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    My wife hates her body. I understand why. She has more than one autoimmune disease. The end result is that she can gain weight (up to 30 lbs or so) in a few weeks. She also is...
    jd5659 jd5659 51-55, M Dec 5

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    Everyday it's the same ****... Today I even caught myself whispering "I hate my ******* life" to myself... Out loud.. Which has never happened before... I just want it all to end...
    MrCutBleedSmile MrCutBleedSmile 18-21, M 3 Responses Dec 5

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    So today I was just surfing through profiles and came across one with the name Funnylookingcorpse, I said hello and introduced myself and some things about who i am. This persons...
    johnnystar4u johnnystar4u 41-45, M 4 Responses Dec 8

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    I was told by doctors in early high school that I had some sort of muscle disease. After a couple years of biopsies and endless tests one doctor finally determined it was...
    JohnnyMarvin JohnnyMarvin 26-30, M Dec 8

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    :( why do people deeply care (or seem to - definitely gets their backs up) more about what something looks like than actually trying to understand the true feelings of someone they...
    KittysKit KittysKit 36-40, F 2 Responses Dec 8

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    Having herpes, I now believe that I will have to settle. Who am I to have standards when I am permanently diseased ? All the cute boyfriends I could have had, all the fun...
    AutumnCarielle AutumnCarielle 22-25, F 3 Responses Dec 9

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    I have always hated myself for this and I've never told anyone about it. So when I was about 10 years old my hands seemed to be getting sweaty all the time even when I wasnt...
    TigersGoRawr TigersGoRawr 13-15, F 3 Responses Dec 10

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    he told me he wants to wake up every morning to me. XD i just don't know what to say. I feel the same way. 100 percent. there is no doubt in my heart or mind this is the man I...
    HigherCalling HigherCalling 22-25, F 1 Response Dec 12

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    This disease makes me hate my body, my skin, my soul, my entire being. I have never felt so worthless and repulsive.
    AutumnCarielle AutumnCarielle 22-25, F 3 Responses Dec 13

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    hello there have this for xmas and more upon request cannabis oil, OG Kush, Jack Herer Marijauna Strain, Granddaddy Kush, Granddaddy Purple, GHB, Actavis thanks and PM me if...
    melisajoey17 melisajoey17 31-35, M Dec 14

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    I have Hypermobility Ehlers Danlos Syndrome (EDS). I also have Postural Orthostatic Tachycardia Syndrome/dysautonomia (POTS). Ehlers Danlos syndrome is a connective tissue...
    jahoz jahoz 41-45 Dec 14

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    Hi guys, I'm 15. And I really only started pulling my eyelashes out about 6 months ago. But I have always twirled and pulled my hair out. In fact, when I was 5, half my head went...
    amybuggie77 amybuggie77 13-15 Dec 14

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    It started out as red eyes, muscle weakness in the legs then a emergency blood transfusion, then told i have chronic kidney disease stage 3, then told im otherwise healthy but...
    shoshoneone shoshoneone 26-30, F 1 Response Dec 17

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    I have always felt like I want to die but can't kill myself because of what it would do to my family but mainly my daughter who I am so close to, I just don't want to face the hell...
    tealc2961 tealc2961 36-40, M 2 Responses Dec 17

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