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Periodic severe flare up symptoms with unchange MR (Read 3064 times)
sheida
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Periodic severe flare up symptoms with unchange MR
Oct 4th, 2014 at 6:17am
 
Hello everyone,
My daughter is 12 years old and adopted from Korea.  She had 3 surgeries for MMD and all successful.  Since April of this year, she gets a mild cold and then for weeks she has leg weakness, belly cramps and amazing fatigue.  In April it took her about 1 1/2 months to recover, she went to school for a month with crutches.  In April, her MRA was very good and no changes seen.  Since Sept 5th she started having the same thing but more severe.  She is still weak, goes to school with wheelchair and crutches, very weak.  In both episodes, we did a lot of lab work and tests like lime disease which all were normal.  Also her urine is very cloudy but normal, except protein in her urine.  Is anybody can help me? Is anybody has these flare ups? Cry Cry
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sheida.reimel1 sheida reimel  
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lostinkansas
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Re: Periodic severe flare up symptoms with unchange MR
Reply #1 - Oct 5th, 2014 at 12:05pm
 
I am so sorry to hear of your daughter's difficulties.  It's so hard to tell if subsequent illness is from moyamoya or something else.  You'll find many cases on here of people having troubles later.  If the MRA's don't show subsequent damage to the brain it's unlikely she is having TIA's (mini-strokes).  But I'm convinced they don't have the full picture of how this condition impacts the nervous system.  So, who knows?  I know that doesn't help, but just know you have supportive folks here.  I hope that continued tests show the problem!
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sheida
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Re: Periodic severe flare up symptoms with unchange MR
Reply #2 - Oct 17th, 2014 at 4:19pm
 
I have to agree with JRL, today my daughter can walk without her crutches after one and half months of severe weakness. We still don't know why.  There is much to discover with brain and MMD.  Thank you for your reply. Smiley
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