[Sally C]

Hi Jgolf,
Just some input from my husband's problem with getting a diagnosis. His marrow didn't show anything definitive when his counts started dropping. After our hemotologist couldn't diagnose she sent us to Medical College of Va. where the 2nd bone marrow biopsy was done. They weren't able to come up with a diagnosis either. Aplastic Anemia was what they suspected. After 6 months of inability to diagnose and several months of already needing red cell/platelet transfusions our hemotologist asked the National Institutes of Health in Bethesda, Md. to take him as a patient (although he probably could have contacted them on his own). Within a week they had a diagnosis of Myelodysplastic Syndrome. It took a year or more after his diagnosis for his marrow to start showing classic MDS marrow. If you don't live near Bethesda you could possibly go to MD Anderson in Houston as well as other hospitals/clinics that specialize in bone marrow diseases. Maybe you will receive more input about this from others on this site. I don't know about Anderson but since NIH does clinical trials, all the procedures, treatments, etc. were free to us. He received Campath there after his diagnosis (4/09) and is now in a clinical trial for Eltrombopag (Promacta) which has greatly increased his platelets as well as his red cells.
I hope this helps and I wish you well.
God Bless,
Sally