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Hi George. Most people have never heard of MDS, but since know about MDS from your co-worker it's not a surprise that you thought of MDS when your partner started having these symptoms. You are right to be concerned over the symptoms. They could indicate aplastic anemia or MDS, but also other causes.
A proper diagnosis is critical and it sounds like his hematologist is working on just that. A bone marrow biopsy (has he had one yet?) can confirm the diagnosis of a bone marrow failure disease and in most cases can distinguish aplastic anemia from MDS.
If, as you fear, he has MDS, the prognosis isn't necessarily a quick decline. Every case is different, but MDS treatments from supportive care to chemotherapy to bone marrow and stem cell transplants are constantly improving, extending lives, preventing the transformation of MDS to leukemia, and maintaining quality of life for years. It's smart to be well-informed about both the good and bad possibilities, but try not to jump to conclusions or let pessimism overtake optimism.
Whatever the diagnosis, make sure he's treated by doctors who are experienced with the disease. For rare diseases like AA and MDS, it's critical.
Please keep us informed as you get more information, and we'll try to help you and your partner.
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