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Just a thought
I just read your update Lbrown, and I am going to put something out there for you to research.
I have been down a crazy road for the last two years, but I have to mention that my story started with me being diagnosed with LGL Leukemia in July 2009 - and then my diagnosis was updated to AA in Nov '10.
These LGLL and AA are very common, and have very common symptoms - not too many doctor's know enough about LGLL to look for it, and what you are describing to me sounds very familiar.
LGLL is also very rare but it might be something worth mentioning to your doctor.
Don't know if this will help or not, but I do hope you get some answers soon.
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Susy, age 48; diagnosed SAA Nov. 2010; treated with ATG Dec. 2010; currently on tacrolimus
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