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RE: [Parenting Children with Moyamoya] hello!!

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  • mandy harmon
    migraines have been reported as a symptom. I know in adults moya moya can cause aunirisims. I was told with my child that blindness was rare with it. Do you
    Message 1 of 2 , Feb 13, 2004
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      migraines have been reported as a symptom. I know in adults moya moya can
      cause aunirisims. I was told with my child that blindness was rare with it.
      Do you still have regular mri's?

      It could be a lack of blood flow causing some of the pain- just a thought.
      It is a progressive disease and many Drs say surgery is the only way to help
      it. I am assuming you are on blood thinners?

      mandy


      >From: "peachums2001" <peachums2001@...>
      >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
      >To: parentingchildrenwithmoyamoya@yahoogroups.com
      >Subject: [Parenting Children with Moyamoya] hello!!
      >Date: Thu, 12 Feb 2004 16:52:26 -0000
      >
      >I know this chat room is for parents for children with moyamoya but
      >I am an adult diagonosed w/ moyamoya 25 years ago at the age of 23.
      >None of my drs took (take) the diagnosis seriosly-- I don't really
      >think any of them know what it is. Anyway - 25 years ago- my eye
      >was affected and I know longer have use of the eye. I never had
      >surgery but as far as I know, nothing else has gone bad. That leads
      >me to my question:
      >Does moyamoya cause pain? I have extreme pain in all my extremities.
      >I have been diagnosed with fibromyalgia but since I recently
      >discovered moyamoya web sites-- I am wondering if pain is a symptom
      >or progession of the illness.
      >thank you
      >

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    • mdkempes@aol.com
      I am not aware of any pain aside from headaches. Why don t you email Dr. Scott in Boston and ask him....even though he is a pediatric specialist, he could
      Message 2 of 2 , Feb 14, 2004
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        I am not aware of any pain aside from headaches. Why don't you email Dr.
        Scott in Boston and ask him....even though he is a pediatric specialist, he could
        probably help you.

        Good Luck.


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