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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. 10 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 3 Responses Mar 11, 2011

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    Related Experiences

    I am 16 years old, I was diagnosed with Kienbock's disease 2 years ago in Stage 2. I started getting pains in my dominant, right hand, so I went to the doctor, then a hand...
    AnAwkwardTroll AnAwkwardTroll 16-17 38 mins ago

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    I was diagnosed with the most painful disease yesterday. I don't know how I got it but imagine it was from an ex that wasn't faithful I'm only 17 and I'm terrified I have the best...
    nadiakp98 nadiakp98 16-17, F 5 hrs ago

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    About a year ago I was diagnosed with a rare autoimmune disease called relapsing polychondritis. There's no way to cure it and most doctors have no idea how to deal with it. The...
    mary909 mary909 16-17, F 7 hrs ago

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    I've been sick now for almost a year. I'm so so so tired of being sick. I think this past year has aged me ten or more. Without any kind of warning or any trigger that I know of...
    thatonewoman thatonewoman 31-35, F 2 Responses 1 day ago

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    So with the new 'Reboot' being so polarizing for the fandom [and for a lot of legitimate reasons] I thought perhaps there could be a TV cartoon set in the continuity of 'The Real...
    FluttershyLabeouf FluttershyLabeouf 18-21, M 1 Response 1 day ago

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    After thinking I was just tired and stressed from moving and selling my previous home and turning completely yellow (eyes and skin), I went to the doctor. I was hospitalized after...
    Zomar323 Zomar323 46-50, F 1 day ago

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    I'm a virgin so of course I don't have a sexually transmitted disease
    LonelyGuy450 LonelyGuy450 16-17, M 1 day ago

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    loosing my brother to a car accident 18 years ago, left me with PTSD. my sister saying I was too " big" to be a bridesmaid in her wedding, left me with self doubt. being diagnosed...
    myjason myjason 41-45, F 1 Response 2 days ago

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    I have been on a combination of meds to treat pain in my bac, spasms in my back muscles, and an anti depressant . I have been doing this combo for around twenty years for a disease...
    boldtimer boldtimer 66-70, M 2 days ago

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    Lost my sister this past may. I'm still working through the grief. She had a rare autoimmune disease that was killing her slowly for years, so it wasn't totally unexpected but that...
    BlissfulBoredom BlissfulBoredom 26-30, F 2 days ago

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    Chronic Obstructive Pulmonary Disease...the beginning stages of Emphysema.
    melbdad melbdad 51-55, M 2 days ago

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    What's gonna determine whether or not I can get out of bed and go to school Monday, is the infectious diseases doctor has to come in, look and examine my hand. Cause I have egsama...
    CreepypastaFan2016 CreepypastaFan2016 16-17, F 1 Response 5 days ago

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    I have tried to post these thoughts before, but they mysteriously disappeared in a few hours, so let me try again. I get fed up with conservative politicians hi-jacking the Bible...
    carlton52 carlton52 61-65, M 2 Responses 6 days ago

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    When people try to seal their brokenness by trying to break another person seem to not realise all they are doing is having a temporary high. Like treating a symptom but not the...
    Idolovemostofyourthoughts Idolovemostofyourthoughts 26-30, F 2 Responses 6 days ago

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    My son is 4 yrs old and was diagnosed with HD at 17 days old. He had his first surgery at 21 days old and gotten a colostomy bag. He had a reversal at four months, didn't work so...
    Rymae87 Rymae87 26-30, F 6 days ago

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    I've had crohns since I was 15. It slowly became a bigger issue in my lay 20's. I ended up with 3 weeks in the hospital, an iliostomy and they removed a significant amount of small...
    deleted deleted 26-30 1 Response a week ago

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    Having this disease is excruciating. Inside I rot and squirm unable to get rid of this feeling, and I just smile to the world to convince them that I'm okay. I can't move forward...
    artemicionmoon artemicionmoon 26-30, M Feb 2

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    I have lost both of my parents to cancer. It is a terrible disease that hopefully we can end. Too much pain has been caused because of it. Too many people lost.
    aaronfunn aaronfunn 41-45, M 3 Responses Feb 2

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    Assume, presume exclude the truth. Teeter totter bicker bother. Life is so wondrous and full of fodder. As the garden grown the plants unfold into trees and bushes bushels of...
    Everyheartbeat Everyheartbeat 26-30 Feb 2

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    Hi, I stumbled upon this site while searching ( as iv done thousands of times, for yeeears now) in hopes that I can find some magical supplement to cure the living hell that my...
    Hopelesslyfallen Hopelesslyfallen 31-35, F Feb 1

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    Stage 4 since 2014. Dxd in 2012 with stage 2-3. I've done a year and a half of Lupron, a year of Progesterone, 1 D&C, two laps, two hysteroscopys, 1 cystoscopy, a $400,000 DaVinci...
    apresm0i apresm0i 26-30, F 2 Responses Feb 1

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    I have a rare disease so I wear a medical ID necklace I never take off.
    MandyR34 MandyR34 22-25, F 1 Response Jan 30

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    I am 22 years old and have known since birth that I was a "carrier" for a genetic blood disease called Thalassemia. My parents told me from an early age that I was not sick but if...
    dgoodspeed dgoodspeed 22-25, F 1 Response Jan 30

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    Your wish means somebody else's downfall. Let's see; I wish all illnesses and diseases will go away. HOORAY! Science and medical no longer required. The doctors at medical centres...
    Sazzio Sazzio 26-30, M Jan 30

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    She threw herself at me. I took things slowly. After a few months, we were official. I was a part of her family's dinners. She was "the happiest they've ever seen her." She treated...
    standardmale standardmale 26-30, M 2 Responses Jan 30

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    the best they've explained it and from the x-rays it shows that L4 and L5 are too big for the rest of my spine. doc calls it an anomaly. what it means to me is pain and a lot of...
    girlpaused girlpaused 36-40, F 1 Response Jan 29

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    Became a member on this site with the little gleam of hope that I still have. My story is very in depth, long, and to be blunt, f!&%>d up. I plan to share my story, and I hope my...
    Hopelesslyfallen Hopelesslyfallen 31-35, F Jan 29

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    Just had seen a friend in a hospital yesterday this person just had their 30 th mental break down its nothing new but this person always seems to stop taking their medications as...
    Bella70 Bella70 41-45, F 3 Responses Jan 29

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    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

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    Hello all I am new ,I was diagnosed in 2005 with familal periodic paralysis . I was hospitalized for 3 weeks having several full blown episodes daily while in the hosptial .I am...
    johnsonrobin59 johnsonrobin59 56-60, F 1 Response Jan 28

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    and I want to keep this disease. If you have this disease it's not harmful in any way just remember this disease can leave randomly but it can come back and then leave and you get...
    aby2015 aby2015 13-15, F Jan 27

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    If I were to describe my anxiety the word would be crippling. Each word after would be never-ending. My anxiety stems from the fact that I have been told since a young age I would...
    Freedgorgan Freedgorgan 16-17, M Jan 26

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    GUYS I AM HAPPY TO ANNOUNCE THAT ONE PERSON HAS BEEN CURED FROM DIABETES! I AM SO EXCITED FOR THE FUTURE. GOD I AM CRYING TEARS OF JOY BECAUSE MY LIFE REVOLVES AROUND THE STUPID...
    kanissen kanissen 16-17, F 1 Response Jan 26

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    Anyone negative with blood test but diagnosed with Lyme ?I show false positive but keep coming up negative.
    kellner27 kellner27 18-21, F 1 Response Jan 25

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    I had my first Parkinson's related fall the other day. The only thing that saved me from hitting the ground was the kitchen counter, had that not been there I would have gone all...
    LifeinWoodinville LifeinWoodinville 41-45, M 6 Responses Jan 25

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    Oscar...For Love About three years ago I was working with a woman who had alzheimers and a broken hip. She lived in a lovely beach home, and she had found a cat who had been...
    Rolle2323 Rolle2323 61-65, F Jan 24

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    I'm not sure how I'll find a sense of self-worth. I'm a "fair weather friend" to myself. I don't support my own decisions. I don't believe myself. I doubt my intentions. I doubt...
    ODSi ODSi 18-21, M Jan 23

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