Hello and welcome to Marrowforums. You've certainly described an odd situation. I don't know why your doctor wouldn't just say you have MDS, but there are some things you can do for yourself:
(1) Take a look at our
MDS Classification Tool to identify your score or subtype under five different MDS classification schemes. It's important to know your classification because it has implications for which treatment(s) might best suit your situation.
(2) Review the
MDS classification information available from the Aplastic Anemia & MDS International Foundation.
(3) Get a second opinion. You don't necessarily need to change the doctor who is treating you, but you want confirmation that the treatment plan is reasonable given your symptoms and test results.
I hope this helps. Please feel free to post additional details about your diagnosis so our members can help.
Regards,
Ruth Cuadra