[Marlene]

Helene,

It is so critical that you get an accurate diagnosis. I'm am sorry to hear you've had such difficulty in getting one. I am not familiar with the Chicago area so hopefully someone will be able to respond with some reccommendations in your area.

I would go back and request copies of your test results of the last Bone Marrow Biopsy and start keeping track of your CBCs. They must provide you with the results if you request them. Since you've seen multiple docs, it would be good for them to be able to compare the old BMB with the new one.

I would also find out if they checked your B12, folate, iron and serum copper levels. If they have not, get them to check these and get copies of the results. If any are low normal, I would consider supplementation to bring them up to better level. Deficiencies in these nutrients can result in low blood counts. There are doctors who do not check these simple things so you need to ask. Diagnosing these diseases is usually a process of elimination. Example....my husband was diagnosed with SAA and they too said upon his first CBC....it could leukemia, MDS, SAA, or PNH. So they ruled out the vitamin deficiencies immediately through tests, then leukemia based on the initial examination of this bone marrow and then finally, they ruled out MDS and PNH (and anything else it could be). That left him with Aplastic Anemia based on his BM cellularity and blood counts.

If the doctor you are seeing has little or no experience in these diseases, make them consult with NIH, Hopkins, MD Anderson or any hospital that has lots of experience with BMTs and these diseases. And I suggest that once you have a diagnosis from this doc, do get a second opinion from someone who's considered and expert in the disease.

You can't really research treatments until they pinpoint the cause of your low counts.

Hope this helps....Marlene