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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 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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    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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    Related Experiences

    So after beating cancer, then I go and get diagnosed with such a rear extremely painful disease, that not even my doctor of 30 years ever heard of it. Here are a few links to info...
    johnnystar4u johnnystar4u 41-45, M Nov 2

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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 1 Response Nov 10

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    And it sucks! Not being able to eat what you what and getting sick if you eat out!
    justonelick justonelick 31-35, F 2 Responses Nov 9

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    Hello everybody, I am a 29 year old woman who has rheumatoid arthritis. I was first diagnosed with this disease 2 weeks after my 24th birthday , let me just say this disease is a...
    dreams1977 dreams1977 26-30, F Nov 15

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    In year 1992, I came down with Ramsay-Hunt Syndrome. Its been a long battle. My face first paralyzed on one side and three months later, the other. This has affected my vision...
    Gustavp Gustavp 70+, M Nov 16

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    I have had herpes since 2011 and the doctor diagnosed it by the sores as something entirely else, but I know that is what it is. My fiance at the time had a cold sore on his mouth...
    iamdiva iamdiva 22-25, F 1 Response 1 day ago

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    Math word problem: if you have 4 pencils, and 7 apples, how many pancakes will fit on the roof? Purple. Because aliens dont wear hats. :) I also have ADHD. Or its more like i just...
    cra2yk1d cra2yk1d 13-15, F 4 Responses Nov 8

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    well this isnt about me. its about my friend. you see, she has a lot of bad things going right. tbh she isnt a she. she's a he (he had transgender) but people think of him as...
    bestchloe bestchloe 26-30, F 15 hrs ago

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    So in 2010 I was diagnosed with a extremely rare disease named Dercums' Disease aka Adiposis Dolorosa. For many years after surviving cancer (Acute Lymphotic Leukemia), I had what...
    johnnystar4u johnnystar4u 41-45, M Nov 8

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    My latest bout with Grover’s Disease came from being very sick. I thought it was a flu or cold. But it only lasted 1-2 days and simply vanished. What I was “bugged” by was...
    rpayton805 rpayton805 61-65, M Oct 25

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    I was diagnosed with CIDP when I was 12 (year 7) and I laughed when they told me because even though I had no idea what it was and the name was such a mouthful, I was relieved to...
    AlexPeyton AlexPeyton 18-21, F Nov 2

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    I've written a little bit about why I can’t get a real job. All of that still stands. But I still am capable of working. I just have some specific needs. Flexible hours...
    Nudg3 Nudg3 18-21, F Oct 26

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    Shock is obviously the first reaction but having then seen and spoke to her in a strange way I feel relief for her. This might help people who know anyone that is suffering with...
    NihilImpetus NihilImpetus 31-35, F Nov 2

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    I have a Demyelinating Disease. MS is also one of these diseases but mine is a new type. I have lesions scattered through out my brain and on the underside of my Corpus Collosum...
    BCulp38 BCulp38 41-45, F 1 Response 2 days ago

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    A mind that is not narrow but shallow, the power of being objective, innocent until proven guilty, self-esteem. All these are abilities a person has to develop in his life. Me, I...
    biancabirsan1994 biancabirsan1994 18-21, F 2 Responses Oct 29

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    scriptURE FULFILLED IN MY LIFE Oct.1947: “My substance was not hidden from Thee, when I was made in secret, and intricately wrought in the lowest parts of the earth. Thine eyes...
    jburns1947 jburns1947 61-65, F Nov 3

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    I was diagnosed with Crohn's Disease when I was 9, somewhere around 2005-07. I had the worst case you've ever seen, but luckily don't have a colostomy/colon resection, I'm thankful...
    ilovemckayla ilovemckayla 26-30, F Nov 3

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    http://www.dailystrength.org/c/Hidradenitis_Suppurativa/forum/12075338-hs-awareness-purple-ribbon-campaign I had no idea there was a ribbon for this .... I'm glad there is I...
    MsAnonymous1 MsAnonymous1 18-21, F Nov 4

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    Greetings. I'm a 49 year old male and I was diagnosed with EF just under 3 years ago. I started on 60mg of Prednisone and am now down to 20mgs a day. I'm not sure which is worse...
    Gobione Gobione 46-50 Nov 5

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    Full moon + Alzheimer's Disease = No fun.
    Myzery Myzery 31-35, F 1 Response Nov 6

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    It all started two years ago. I was 21. I had viral pneumonia and it went on for too long (probably bc I never took a day off to really recoup). It started in my mouth near the...
    cpnhook21 cpnhook21 22-25, M Nov 10

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    I am sad. I hope I can get a diagnoses and move on with my life. I just want to gain some knowledge and prevent more damage. I am only in my 20s. However, I trust that God will...
    HigherCalling HigherCalling 22-25, F 1 Response Nov 11

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    This is my first post on EP but looking forward to sharing with others. I have Crohn's disease and life has never been easy. I'm a glass half full kind of guy so even on bad days I...
    BrianIBD BrianIBD 31-35, M 1 Response Nov 12

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    I was first diagnosed with transverse myelopathy in 1999 and my neurologist at the time gave me gabapentin and told me it would eventually go away and never come back. Well, it...
    manypenguins manypenguins 56-60, F 2 Responses Nov 14

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    The summer after 5th grade, i started to choke on all my food. i thought it was maybe something that would go away, and i didn't want to tell my mom because i hated going to the...
    moonmermaid moonmermaid 18-21, F 6 days ago

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    My dad has this horrible disease. The man admire the most in the world is fading away. It breaks my heart. I have been asked by my mother to take his car from him tomorrow. I do...
    001goodguy65 001goodguy65 46-50, M 4 Responses 6 days ago

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    You are amazing. My mother had lupus. I don't know what kind though. I was 5 when she was diagnosed. She also had fibromyalgea. Please excuse my horrible spelling. I know she was...
    mstenorsaxplayer mstenorsaxplayer 18-21, F 1 Response 1 day ago

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    Of the 7 billion people said to be on earth - single is a disease that happens to survive and still out number this great odd in figures. Maybe earth should of been bigger lol.
    stephenrko stephenrko 31-35, M Oct 26

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    Today is the second day that we have basically kept my mother in a "medicine induced coma" to keep her from being in pain. When I expressed my guilt, the Hospice nurse told me to...
    Myzery Myzery 31-35, F 1 Response Oct 29

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    If you don't have #endometriosis, #pcos #fibro #IC or any other crazy auto immune diseases you can never understand what we feel physically or mentally. I'm so tired & depressed...
    lisettemades lisettemades 22-25, F 1 Response Oct 30

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    It's going to be a long night... I get home from shopping at several stores...I detest shopping. DETEST it! Only to find my mother in the family room pumped up on morphine and...
    Myzery Myzery 31-35, F Oct 30

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    She doesn't understand, I don't think she's ever going to how bad the pain is. She thinks I'm overreacting and it's all an act. She asked me if I am gonna go to my doctor in 3 mont...
    TCL009 TCL009 41-45, F 1 Response Oct 31

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    I know deep down I should leave him but I can't! It all starts where he finishes me every night because he's 'tired' when I go places and are not back when he says I've been...
    butterfly1200 butterfly1200 18-21, F Nov 1

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    Some people don't understand how painful this illness can be. It's also worse that this is very much an "invisible" disease. I got diagnosed with Fibromyalgia when I was 20 years...
    cec0692 cec0692 22-25, F 4 Responses Nov 1

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    When I was a kid, I was pretty chubby for my height and age... it wasn't healthy, but I loved to eat. Because of this I was made fun of and called fat all through Elementary and...
    Wildmoonchildd Wildmoonchildd 18-21, F 3 Responses Nov 2

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    I had my first episode fourteen years ago and saw several doctors including ENTs and neurologists while being unable to work or drive for over eight months. I was tested for many...
    Redwood11 Redwood11 41-45, M 2 Responses Nov 2

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    I need help what to do. Tried everything. My life is going to be ruined by this disease. I'm afraid in going to loose my love
    josh221992 josh221992 22-25, M 4 Responses Nov 4

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    'Somewhere, There's A Sense of Humor' Said The Jack In The Box 'We Keep A Sense of Humor' Said The Gambler's Tokens At The Slots 'I Don't Like Your Sense of Humor' Said The...
    nivanvc nivanvc 36-40, M Nov 5

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    I was diagnosed with this a couple weeks ago. I have had 3 lesions in a year. I am 22 years old and working on my masters degree in communication studies. Apparently LyP is rare...
    srf0013 srf0013 22-25, F 1 Response Nov 5

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    well pre... but I think it's such a big disease and would really like to study it. why do you think more people today have diabetes?
    ladeputy ladeputy 22-25, F 1 Response Nov 8

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    A Haunting in Sonora By Paul Dale Roberts, HPI Esoteric Detective Halo Paranormal Investigations - HPI International https://www.facebook.com/#!/groups/HPIinternational/ Paranormal...
    PaulDaleRoberts PaulDaleRoberts 51-55, M Nov 9

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    How do you cope with your spells of vertigo? I'm having a grommet fitted inside my ear as mike is caused my Ménière's disease. Can be quite nauseating at times especially when...
    NihilImpetus NihilImpetus 31-35, F 2 Responses Nov 9

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    Why do people think it's okay to wave their disease infested hands in front of other people's faces. I'm not gonna be surprised if if you get your finger bitten off.