New to site, need advice

[Michelle D.]

Hi. I am a 37 year old with pancytopenia. I was diagnosed with thrombocytopenia 2 years ago while pregnant. After goving birth I was treated with ritauxin and decadron. My platelets went up from being in the low 30's to averageing in the 70's after treatment. One year later my white blood cells slowly started to decline. Two months ago my hemoglobin also dropped. My latest cbc showed WBC 2.2, hemoglobin 9.5, and platelets 78. Just had a BMB a few days ago. Hematologist said he would call me with the results.
When he calls me what questions should I ask? What is considered normal results for a BMB? Are my cbc numbers really bad? Doctor also tested me for a bunch of vitamin deficiencies and everything came back normal but I had a very high b12 level. Also my liver function tests are slightly elevated. My rheumatiod factor came back very high at 400. Doctor said this is an indicator of high levels of inflamation.
Also does anyone know of a really good hematologist that specializes in bone marrow/ autoimmune disorders in the L.A. area?
Another weird thing is that I tested positive for EBV. My hematologist said he doesnt know what to make of that since im not sick and have no symptoms of mono. This also would cause a sudden drop in counts and not a slow drop over a year.
Thanks for reading my post. Any advice is greatly appreciated!🙂

[bailie]

Welcome to the forum. The BMB should add greatly to the CBC results. You should be getting some results by now. The important thing at this point is to get organized with your results so they can be easily compared. Let us know about the results of your BMB. It is not fair to you for us to speculate with out the BMB results. Whatever your situation, knowledge will be to your advantage. We wish you the best.

[Hopeful]

Hi Michelle,

I would highly recommend seeing Dr Ron Paquette at UCLA. He is excellent. He will want to see all or your results and your recent bone marrow slides. So, start requesting those from your current doctor now.

I also have very high B12. I am not sure what to make of that. Let me know if you learn anything!

If you ever had mono as a kid, you will test positive for EBV now and forever. If you don't remember having mono as a kid, you may have had just a really mild case. So no need to panic about that result!

Good luck!

[Michelle D.]

Thank you so much for your responses. It is so nice to know that I am not alone in this. My BMB results should be back in about a week and I will repost then. I will also check out that doctor from UCLA.

[Missb1969]

I had a BMB that my hematologist said was abnormal, but wasn't for sure exactly what was going on. The things that she said were concerning were the marrow cellularity showed mildly hypocellular for my age, that the stain for CD34 show small number of blasts, and the reticulin stain shows focal reticulin fibrosis. I have had elevated RBC, hemoglobin, and hematocrit for sometime now. I also have an enlarged spleen. I also have a couple auto immune diseases( rheumatoid arthritis and Hashimoto). I don't get to meet with my hematologist until November 25th to speak to her in person. I found this forum and was wondering if anyone has had any of these results on their BMB and what the outcome was. I also like to have good sense of what these terms refer too. If anyone has any advice or similar results I would greatly appreciate any advice. Thanks

[Margaret W]

I don't know... I've known people with labs similar to yours who were treated for a couple of different conditions. One was a physician friend of mine who recovered nicely after a few months of treatment. If I were you, I'd reserve all judgment and online research until after your appointment on Nov. 25.

I've never had high HCT or HGB or RBC levels with my markedly hypocellular marrow presentation - and I've had that for my whole life (over 60 years). So I don't know what's going on with yours. As I said, just try to reserve judgment. I know it's hard, but the evidence is not ripe yet, as we used to say.

Best wishes to you,

Margaret