[rdavidp]

On January 12, we rushed my wife to the hospital because she was having pains in her right side and shoulder with difficulty breathing. A few days earlier, she was having situational dizziness. Hospital immediately starts checking for heart attack, but rules that out. In doing so, they find that all of her blood counts are "How are you even still alive" low. By their measuring, her wbc is not even 1, with normal range between 4 and 7. Her red blood count was 4, normal is in the 20s. Also her platelettes were a bit low too, don't remember the count. They immediately get the hematologist on call and he starts working with us to start testing for everything, and orders a bone marrow biopsy for that day. He doesn't have a long enough needle, so no sample. The next day he tries for the other hip and is able to get an aspiration, but not able to penetrate the bone enough for marrow. A week later on the 19th all the other blood tests for infectious diseases and other things come back clean so this has to be some kind of bone marrow/blood disorder. He does another biopsy that day, and is able to get a good bone marrow sample. The doctor also starts neupogen injections after this biopsy. He does his own work up and determines either AML or MDS, most likely MDS. He sends the samples to John Hopkins, which is not too far from us, to get their opinion. On Feb. 1, wife is still in hospital because she now has a bad cough and breathing problems, the hematologist comes back with the results from Hopkins, and they say it is AML. The next day, she is transfered to the leukemia ward at John Hopkins. That day as soon as she gets in, they take their own bone marrow biopsy. For the next few days, all the talk is about leukemia. Then on Feb. 4, the team of doctors come in and say that the diagnosis of AML may be been premature, and also the neupogen shots have skewed the results of their bone marrow biopsy. The team now says it could still be AML, but now looking more like MDS. We will need to wait for all the labs to come back, which I am fine with because I rather wait for the right diagnosis rather than going back and forth. As this week has progressed, they seem to be more sure that it is MDS that my wife has, but when I ask why they are more sure that it is MDS now they just say we can discuss the results next Thursday with Dr. Carraway.

Well, I am not too satisfied with that, and all I really want to know is what are they seeing in the test results that has changed their diagnosis. Is it difficult to diagnosis AML and MDS because the two seem to be similar? Is that the reason, if so just say so. Are there some kind of markers you see in MDS that you don't in AML, or markers that clearly mean AML? That is all I really want to know. Also since my wife is still in their hospital, why can't we get someone to talk to us about MDS instead of waiting until next Thursday. I know we won't be able to talk about my wife's specific case because they said they were waiting for more results, but just give us some information on the disease. I know we are dealing with the leukemia doctors, but can't they send someone up to just talk to us for a couple of minutes?

They also mentioned that my wife may have to undergo another bone marrow biopsy in the next week or two after the effects of the Neupogen have worn off in order to get the full results and diagnosis. That means we may not know if this is AML or MDS until the end of Feb., and her she has already spent one month in the hospital, and would have whatever disease for atleast a month and a half. If it is AML, we don't have that time.

What is the best way to ask the doctors what has made them change their diagnosis and seem sure about MDS while still waiting for the full results and possibly needing another biopsy, and actually get them to answer? Anyone else have this much trouble in getting diagnosed?

Meant to add that my wife is 42 years old.