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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. 7 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 4 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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    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 10 Responses Jun 14, 2010

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    Related Experiences

    I'm 29 y.o. now. Living in eastern Europe. For 8 year I'm aware that I have Lyme Disease. 8 years ago my neurological (only - no joint pain) blew up my life. I was a second college...
    someSadMan someSadMan 26-30, M 1 Response Aug 28

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    With Sept being thyroid awareness month, I wanted to share my experience w/ thyroid disease. Within a yr of separating from the Air Force in 2005, I started experiencing strange...
    afdragon afdragon 36-40, F a week ago

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    I know what you're going through and I'm so sorry that you are. When I read this group and the postings in it, I cried the entire time because your experiences are eerily close to...
    smgreen1703 smgreen1703 22-25, F Aug 24

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    I have really amazing news!!! I received Radioactive Iodine treatment about 4 months ago due to an incredibly large flare up that left me sick for a couple of months. But the...
    CharliBrown CharliBrown 16-17, F 2 Responses Sep 5

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    Can someone here explain to me the kind of pain and location they had/have during issues with their liver? And any other symptoms? I have been having mild but persistent acking...
    sugarcakes143 sugarcakes143 18-21, F 3 Responses Aug 28

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    I found out I have Celiac in 2008. I cannot eat bread, pasta, or cereal that contains wheat, barley, or rye. Anyone want to share recipes for gluten free?
    jrice356 jrice356 46-50, F 1 Response Sep 1

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    I have not been diagnosed as of yet, I am 47 and use to be a fairly healthy drinker, all tests are normal,but I can tell something is very wrong. Dull pain under right rib cage...
    skyriter88 skyriter88 46-50 6 days ago

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    I was diagnosed 7 years ago, after my first child was born. I was lucky enough not to experience any significant symptoms until just recently...and it just seems to be heading...
    suzeq42 suzeq42 31-35, F 2 Responses Sep 4

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    I was recently married and working at a full time job at a medical clinic. We were having our yearly wellness exam for our insurance. Not even 2 days later, I received my results...
    Ilovetosing626 Ilovetosing626 26-30, F Aug 22

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    I'm pretty sure I have Lyme Disease... And after reading everyone's experiences, I am almost positive. I pulled a tick off of me about three years ago and developed the signature...
    Efmatthe9 Efmatthe9 22-25, F 3 days ago

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    I inherited all of my mother’s best qualities. Yeah my mom was a peach. She passed on so many characteristics which are just now blossoming with age. More similarities present...
    dragonflEYEfly dragonflEYEfly 36-40, F 1 Response 3 hrs ago

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    When I was younger my family thought my mother had bipolar disorder. I grew up in a behavioral mess of bad decisions my mother had continuously made. When I was 8 my mother...
    tswmcgee tswmcgee 26-30, F 4 hrs ago

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    This awful disease makes me think terrible things that I really don't want to think about then it makes me want to confess them to someone, especially if the thoughts involve them...
    somethingx3 somethingx3 31-35, M 1 Response 13 hrs ago

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    I first developed a rash on both of my arms in 2008. Since then I have seen 9 doctors and the 9th doctor was the first one who could identify the rash. He told me there is no...
    Anstead Anstead 70+, F 4 hrs ago

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    I had Grover's on my back and chest. Real itchy. My dermatologist prescribed Triamcinopone Acetonide. Expensive and it didn't seem to help much. I had an old bottle of Calamine...
    mrbob8 mrbob8 70+ 4 hrs ago

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    i fell in love with my best friend when i was 17, her name was sarah.we always done everything together, even went to the same art course. she helped me out through some dark times...
    Thebrokengingerbreadman Thebrokengingerbreadman 22-25, M 1 Response Sep 4

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    Laser eye surgery in under a month l have no option but to try this l have a severe case of this disease and have to be taken off all of my steroids due to health risk/problems...
    Tspklondon Tspklondon 26-30, F Sep 6

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    My mom told me once that her disease made her feel like an octopus. I said what do you mean? She said her arms and legs feel like they are out of control. She wants me to take her...
    WildHydrangeas WildHydrangeas 26-30, F 2 Responses Aug 26

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    I was diagnosed about 3 years ago. Been sick for at least 5 years, probably longer. I have tried many meds and still can't get my disease out of an active state. Not sure what...
    Enaed Enaed 46-50, F Aug 29

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    I have seen a lot of people on EP and in real life throwing this word around like a hot potato. The two most inappropriately used words in this generation, in my personal opinion...
    AlexandriaDark AlexandriaDark 18-21, F Aug 30

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    I have had bloating and gas, alternating with constipation and hemorrhoids, and was told I had irritable bowel syndrome, for several years now. in 2006, I went through some very...
    gastricwoman gastricwoman 51-55 Aug 30

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    I believe it's a disease. It's sad that girls find that the right way to go even though everyone is best the way they are. No one should feel they need to change in order to keep...
    NotSoStrongSuperman NotSoStrongSuperman 16-17, M Sep 6

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    Depression is not a disease, you cant catch it you can not spread it, and depression can not be "cured" in the same way as say diabetes or a flu *rolls eyes*
    xXAriannaXx xXAriannaXx 13-15, F Sep 6

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    I have polycystic kidney disease. The largest cyst measures 6cm in right and 5cm in left kidney. the latest scan report says that 'corticomedullary differentiation lost in with...
    aneetasree aneetasree 31-35, F Aug 22

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    Yesterday, something happened to me that scared the crap out of me. For more than ten years, I have had Ménière's disease. I was shopping in Target when I was suddenly hit with...
    scottdavidsmith scottdavidsmith 46-50, M 1 Response Aug 22

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    Did anyone else contact this disease right after receiving vaccinations? I contacted this disease one week after receiving TDAP and Shingles vaccinations.
    Bluesntennis Bluesntennis 66-70, M 1 Response Aug 22

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    i went to the doctors one day for a physical, the lady sent me to endocrinologist. he took my blood work and said my levels were very low and i was too take a pill of 88 milligrams...
    mlhenry mlhenry 18-21, F 1 Response Sep 1

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    My dad was recently diagnosed with MELAS. He is 48 years old. He has been in and out of the hospital due to seizures and what we thought were strokes. He suffers from hearing loss...
    ering08 ering08 22-25, F 1 Response Sep 1

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    As a zoologist I have always depended on my physical wellness to support my life motivations. It was only around 2 years ago I noticed that there was a big change to my physical...
    nanedesu nanedesu 26-30, F Sep 5

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    I have a heart disease known as Tetralogy of Fallot, and I've had since before birth. This is a defect that causes a hole in ones heart, and I had surgery after I was born. This...
    StarShineGirl StarShineGirl 16-17, F 1 Response Sep 6

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    I struggle with it everyday. My mom thought this might help. Im trying new things so here goes nothing. I dont want to be defined by my disease, but everything i do is impacted by...
    BrittMari BrittMari 16-17 2 Responses 4 days ago

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    Today was the APDA Parkinson's Walk in Seattle. It was a pretty good turn out. In total the walk raised almost $26,000 for Parkinson's research. Personally I was able to raise...
    LifeinWoodinville LifeinWoodinville 41-45, M 1 Response 1 day ago

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    March, 2013 I was told I had polymyositis. My Doctor said I was using 20% of my muscle. I lost my job and living on SSD. My treatments are IVIG and predisone. When I first...
    Numberplay Numberplay 46-50, F Aug 17

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    I contracted q fever while visiting farms looking for a baby goat for my son for Easter in the spring of 2012. I was fatigued and my joints hurt something terrible. When it was...
    myfamilymatters myfamilymatters 36-40 Aug 27

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    I first started losing my hearing when I was 13. I suffered an abrupt and massive hearing loss literally over night when I was 13, and I had to be fitted for a hearing aid in my...
    Runningagainstthewind Runningagainstthewind 22-25, F Aug 29

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    I'm tired of struggling with this condition and everything it entails. I was dismissed from my doctor's office because I "dared" to have a thyroid ultrasound somewhere else and...
    deleted deleted 26-30 1 Response Aug 29

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    I was diagnosed at age 8 with Sjogren's (I am now 22 years old) I have never talked to another person with the disease but would love to. As you know if you have this as well...
    hollyphoenix92 hollyphoenix92 22-25, F 1 Response Sep 5

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    My first hint that something wasn't right was walking back to our cruise ship with my daughter. I was having a hard time walking and thought maybe it was sciatica. I barely made...
    NixEgirl NixEgirl 56-60 Sep 7

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    I am not the actual person who has bullous pephigoid. My mother was diagnosed this past Monday with this nightmarish disease. She was 69 years old this past August and she is a...
    Jules2109 Jules2109 41-45, F 6 days ago

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    Life is a sexually transmitted disease and the mortality rate is one hundred percent. R. D. Laing
    deleted deleted 26-30 Aug 17

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    Last year in August I got extremely sick. So sick that I passed out in a grocery store and ended up in the hospital. They said I was just dehydrated. Gave me some fluids and sent...
    connorelaine connorelaine 18-21, F 1 Response Aug 19

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    Tired of seeing dumb *** "pro Ana" "pro Mia" people on here. Like seriously, why do you want a ******* disease? If you want it so bad, please take mine. Give give my arm away to...
    disasterland disasterland 18-21, F 2 Responses Aug 20

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    I lost my father 7 years ago to the most terrible disease, cancer, we just watched him fade away.
    Wheels64 Wheels64 46-50, M 1 Response Aug 23

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    A poem I wrote earlier in the year, at one of my lowest points with my mother, after she drank so much she was hospitalized and I feared for her life: My Mother, MS My mother is...
    TheQuietGem TheQuietGem 26-30 1 Response Aug 29

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