[kmiller]

I'm glad to find out about your forum. After several mos of blood tests and then a bone marrow test, my MD feels confident that I have MDS, probably RAEB 1, with a trisomy 8 chromosomal finding. As I understand it, I am neither low or high risk, but somewhere in the middle. Its mostly my WBCs that are affected now (last test 1.9) and I've been feeling tired, run down, headachy, but no probs with infections. MD has suggested I meet with Dr. Gore at Johns Hopkins to discuss treatment options. A friend in the know thought maybe I might want to check NIH clinical trials as well. Anyone know about either Hopkins or NIH work with MDS.

I am 42, so young to get this diagnosis. Depending on how fast things change, I gather I'll be facing a decision about transplant at some point. I have two siblings, neither has been tested for a match yet.

This all seems unreal to me at this point. I've always been blessed with good health - this has been a real shock. I am married with two young children, so of course I'm worried about the impact of all this on them. We haven't talked to the children yet (11 yrs, 8 yrs), thinking we'll wait until we know how we'll approach treatment (so far none). Going to get blood checked again on Tuesday and trying this week to set up an appt at Johns Hopkins.

Anyone with suggestions or thoughts for me? Thanks, Kelly