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Old Fri Sep 21, 2012, 04:40 PM
Sally C Sally C is offline
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Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 467
Hi Coping,
There are alot more knowledgeable people on the forums than me so all I can give you is my husband's experience with MDS.
It took 6 months for a diagnosis of MDS after finally going to the National Institutes of Health in Bethesda, Md. - 4 months after starting transfusions.
Initially he had hypocellular MDS which was part of what caused the confusion. He then had hypercellular MDS for a while and is now back to hypocellular MDS. Our oncologist is an excellent MDS specialist. On our first visit she drew 3 overlapping circles - one circle for MDS, one for AA, and one for PNH. She explained that sometimes the diseases can overlap. She thought in Don's case it may be a MDS/AA overlap. As I mentioned, he ended up with a diagnosis of MDS. Beyond that I can't offer anything else. These diseases are so complex and changing that I don't know that the doctors always have much of an explanation of things - just a way to try and treat the disease.
I know this doesn't give you much information - just one case study.
I wish you well.
God Bless,
Sally
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