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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

    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 13 Responses Jun 14, 2010

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    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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    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

    When I had braces I got a disease in my gum and my gum had reduced a little bit. I've had a gum graft done 4 times now. It still hasn't worked 100% but it's better then it was...
    epsarah94 epsarah94 18-21, F 6 days ago

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    Thought all you celiacs would enjoy this: Types of people when they find out I'm a celiac: The careless: oh, you have to digest it in order to get sick, right? I can play with my...
    SparkleSwirl SparkleSwirl 18-21, F 2 Responses Apr 9

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    Usually not a day-to-day issue for me. But when an infection flares up, watch out. Starting to feel one coming. Dammit.
    Sicarium Sicarium 36-40, M a week ago

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    It started when I was 4 and I just can't help it! I get so anxious, it becomes an obsession... I feel as though hate is part of it too... And... I need a ton of help! I know...
    ONESTARRYSTARRYNIGHT ONESTARRYSTARRYNIGHT 26-30, F Apr 19

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    I feel like I haven't even come close to reaching my full potential, the potential as was possible in years past not the potential as is possible now, which is lesser. I am 30...
    zarpanzur zarpanzur 26-30, M Apr 13

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    Lately I have been feeling so tired and weak and finding myself wanting to sleep all the time. This is not normal for me because all my life I've been a girl with tons of energy...
    hannahphillips hannahphillips 13-15, F 4 Responses Apr 23

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    I was diagnosed with mixed connective tissue disease last year, I was miserable and desperate for a better life. I decided to fight back and I became a fitness coach for Team...
    lizmidkiff lizmidkiff 26-30 Apr 21

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    Just recently diagnosed with degenerative disc disease in L4; L5 :( i was a very active person,played basketball and gym mostly everyday. Im told not to engage in any high impact...
    giabaoc giabaoc 18-21, F 1 Response Apr 5

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    After 24 weeks of Sovaldi/Ribavirin treatment and another 6 months post-treatment, I was given a "cured" letter from my GI doc. I'm at the beginnings of stage 4 fibrosis...
    ExHepCinTX ExHepCinTX 46-50, M Apr 12

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    Research on Movement Disorders! If you live in the San Francisco Bay area or Boston area, we are looking for people to participate in a research study on the topic of living with...
    tovalynn tovalynn 26-30, F 1 Response Apr 15

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    Hi all, I Have a grown son with Hirschsprung's disease and would love to offer support or advice to any other mums out there who need it. Xx
    palmerli1 palmerli1 41-45, F 1 Response Apr 19

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    I took my child to the doctor for a blood test and the test results came out that she has celiac disease, I was confused because my child is always a healthy child without any...
    siujdisjiujs siujdisjiujs 70+, F Apr 22

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    Dear Crohn's Disease, I wish you would stop hurting me. You make me feel weak, and prevent me from participating in activities. I want to be stronger than you but it's hard. You...
    SpaceGlitch SpaceGlitch 16-17, F 20 hrs ago

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    Hi, I'm a 20 year-old-girl from Finland and I was diagnosed with en coup de sabre when I was 17, but I have had it for 6-7 years. Since diagnosed I have been going to a skin doctor...
    meeri95 meeri95 18-21 Apr 24

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    (1980) I was born while my parents were getting divorced. I saw my dad a handful of times. (1983) my mom remarries a man who likes little girls. My mom knew what was going on but...
    wingedvalkyrie7 wingedvalkyrie7 31-35, F 1 Response Apr 24

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    Sometimes I push myself too hard trying to be the mom I think I would be if I weren't diabetic. My daughter is 5 and just wants to play with me,and even though she doesn't know it...
    hernameisME hernameisME 26-30, F 1 Response Apr 5

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    About 7 years ago I began getting really sick Like having the stomach flu and it never going away, I lived in the medical capital of the world , Boston, and yet still no one could...
    AmandaGP AmandaGP 22-25, F 1 Response Apr 6

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    I've always been willing to return the favor like I don't have any problem with girls sit sleep with other guys and what not you know tell you the truth most people that have sex...
    RIDER6X9 RIDER6X9 26-30, M Apr 7

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    i dont know whether i'd say i am not ready to recover but i will most likely stop once i reach my goal weight. i am bulimic, at longest a week goes by before i purge, whether its...
    confusednormalness confusednormalness 18-21, F Apr 8

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    I was wondering if I could have any help regarding this disease. My grandad has this and is in his late 70's. My grandmother is carrying for him but struggling to do so and there...
    kim59741 kim59741 18-21, F Apr 13

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    Hey guys, deleted my profile for some silly reason (read ex boyfriend) but I need the support. Feeling gross and disgusted and that I will never find someone accepting of this...
    Redvelvet58 Redvelvet58 26-30, F 6 Responses Apr 13

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    I was recently diagnosed with this disease.It is so frustrating to see doctors not having knowledge and more than that their unwillingness to help.It all started last yr in July...
    me317 me317 36-40, F Apr 15

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    Research on Movement Disorders! If you live in the San Francisco Bay area or Boston area, we are looking for people to participate in a research study on the topic of living with...
    tovalynn tovalynn 26-30, F Apr 15

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    Research on Movement Disorders! If you live in the San Francisco Bay area or Boston area, we are looking for people to participate in a research study on the topic of living with...
    tovalynn tovalynn 26-30, F Apr 15

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    A broken heart isn't always due to a break up, as so many people think.. My heart breaks whenever I hear or see about innocent children who die in wars. My heart breaks whenever I...
    Rourou19 Rourou19 18-21, F 1 Response Apr 15

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    I have this but I have periods of denial which mess me up mentally because admitting to having such a disabling disease is so difficult. I go to college because my parents forced...
    fallenstar23 fallenstar23 22-25, F 1 Response Apr 16

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    who would want a diseased girl when there are so many healthy ones to choose from?
    AutumnCarielle AutumnCarielle 22-25, F 4 Responses Apr 16

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    Emetophobia has nearly ruined me. Due to the severe and prolonged stress of graduate school and full-time employment (yes, together), I developed terrible gastritis and GERD. To...
    marinderso marinderso 26-30 1 Response Apr 16

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    One bad thing about commuting in a big crowd in Japanese railway system is when someone has a cold or flu virus and does not wear mask people around them can easily catch the...
    katsuobushi katsuobushi 36-40, M Apr 18

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    I was diagnosed in December, but I didn't need a doctor to tell me I was anorexic. I could recognize the symptoms of the disease. My boyfriend was the first to start questioning my...
    ioti ioti 16-17, F 1 Response Apr 19

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    My inner ear problems began in 2009. It started with a head cold, whereby my right ear felt stopped up. In 2013 I had my first vertigo attack. Soon after, I was diagnosed with...
    MyMigraine MyMigraine 56-60, M Apr 21

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    I was watching a harassment video at work and a guy in the video said "why do they call it PMS?" "Because mad cow disease was already taken!" I can't even. :P lol.
    churchdadatnight churchdadatnight 18-21, F Apr 24

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    I am a 17 year old girl i suffer from depression but mostly a heart failure Cardiomyopathy and i got an inherited disorder called Porphyria that my dad's friend try to find a cure...
    KateDark51 KateDark51 16-17, F Apr 24

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    It's interesting how I found this website: I googled "introverts anonymous" on a whim. I was actually thinking more along the lines of a sort of chatroom where I could Interact...
    sailman306 sailman306 22-25, M Apr 25

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    Was hanging out with a guy and he came over and we watched a movie. He started trying to get touchy feely and I told him I didn't want to do anything. He could tell something was...
    Redvelvet58 Redvelvet58 26-30, F 1 Response Apr 25

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    "Booksmart" "You don't use your brain" "Do not make decisions on your own anymore, ask me before you do anything" "F*** U" "Stupid" "Lazy" And that's not even half of it. I can...
    DearYou DearYou 22-25, F 1 Response Apr 25

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    My aunt is dying of Lou Gehrigs/ALS disease. Last night I dreamt my mom called me to tell me she passed. I feel my dream was God's way of getting my heart prepared. I know it won't...
    Bluetangerine Bluetangerine 46-50, F 2 Responses Apr 26

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    Its been hard, im very young and just found out i have h. I need someone rn who understands what i am going through that will be a friend to me, im still in highschool.. my parents...
    valxoxo48 valxoxo48 16-17, F 2 Responses Apr 26

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