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Fresh muscle biopsy

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I am a little late posting regarding this subject awhile back, but I

was curious about my daughter, Lily's biopsy results that we were

waiting for. So, I called to find out if hers were done fresh or

frozen and not only did they tell me it was fresh, but I got the

results back too! I thought that it was posted that there is only 3

places that do fresh, but I didn't think OHSU was included. They do

fresh at Doernbecker children's hospital at the Oregon Health and

Sciences University in Portland, Oregon. I've only been there a few

times, so I don't know the reputation there, but it seems good.

Anyway, her results all came back negative. But I believe they still

think it's mito related due to her MRI results, so I guess we'll

find out what comes next at her appointment on 6/21. Any

recommendations or suggestions on what I should be doing next? I

don't know if I should be pushing for any other meds besides

Carnitor, but I feel that if something could be given to her to

help, I want to give it to her! Thanks for all your help. I haven't

posted much cuz I haven't felt of much help to anyone here, but

hopefully someday I'll know as much as everyone else!! Still just

trying to digest everything! Thanks again.

Amy

mother of Lily, 21 months, was suspected of Leigh's... but now???!!!

And Austin, 4, seems healthy, just overly active!

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