Hi Pdaw,
It took 6 months to get a firm diagnosis for my husband. I'm sorry to tell you his diagnosis was MDS. His local expert on MDS sent us to Medical College of Virginia with no luck. It wasn't until we were accepted at The National Institutes or Health in Bethesa, Md. were we able to get his diagnosis - 4 months after starting transfusions.
If you do get a bad diagnosis, please keep the faith as they have made great progress in dealing with these blood diseases. My husband needed about 130 transfusions in a 2 year period and was at one time on his onologist's "death list". He is now transfusion independent with 2 of the 3 lines in the normal range (all were affected at one time). Platelets at last check were 108,000. His lowest was 4,000; RBC lowest was 6.5 and neutrophils hit 0.0.
Please keep the faith and know that you have a wealth of knowledge and caring people on the Forums.
God Bless,
Sally
Last edited by Sally C : Fri Mar 22, 2013 at 11:21 AM.
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