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mitochondrial disorder
by fiveo, Nov 14, 2007 09:04PM
My 3 year old daught has a suspected neuromuscular disorder, possibly mitochondrial (due to very high CK levels 3000, 2500, and 300 when tested). The doctor did explain the other elevated blood work that made them think it was mito., but I don't remember what they were.
My daughter's results, including MRI, was reviewed by a new geneticist, who is thinking that there micropolygyria in her frontal lobe as well. We have not yet had a consultation, and I'm sick with worry about what this might all mean. If anyone has any knowledge about how elevated CK and micropolygyria might be connected, I would appreciate the feedback. And any ideas for treatment options, prognosis, etc???
Thanks
Worried Mom
My daughter's results, including MRI, was reviewed by a new geneticist, who is thinking that there micropolygyria in her frontal lobe as well. We have not yet had a consultation, and I'm sick with worry about what this might all mean. If anyone has any knowledge about how elevated CK and micropolygyria might be connected, I would appreciate the feedback. And any ideas for treatment options, prognosis, etc???
Thanks
Worried Mom
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Good luck. .