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wed may 27. new neurologist

Sunday, May 31, 2015

Wednesday, ashlea had an apt with her new neurologist at UHCC in Syracuse. I finally got some answers I've been looking for for years. when we had to switch to a different neurologist years ago, her new one didn't seem right to me. kind of like a quack. he kept saying she only had tics and dismissed all of the testing her pediatric neurologist did. BTW, he had 40 years experience, so to dismiss what he said was really odd and I found it cocky of this "new" doctor.
so I have been keeping all of her records from both of her neurologists, the first with 40 years behind him and the "quack". it's a pain but necessary because you never know when you will need them. so this new neuro quickly scanned through them and took his own notes. anout her muscle biopsy, her bone marrow, her brain MRIs

AH! she does have CHOREA, not tics. (duh, to the quack) and we already know about the myopathy. repeat of the most recent brain MRI to see about growth in brain lesions and a specialized blood test because he's fairly certain she has a genetic disorder.

so there you have it!!!
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  • no profile photo CD9065446
    I think you must be very strong, and your daughter is lucky to have you as her advocate. Sending positive vibes your way for accurate answers and advice.
    2055 days ago
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