Possible misdiagnosis? I need advice, please!

[CatherineJ]

Hello all,

I was diagnosed with RCMD MDS in January 2012 after two bone marrow biopsies in London. I have since moved back to the US and my new doctors believe that I was misdiagnosed.

The first BMB showed <5% cellularity and no dysplasia, but the aspirate showed some dysplasia so I had a repeat BMB two months later to determine whether it was AA or MDS. Second BMB showed "significant dysplasia" in January and correlated with aspirate.

The doctors in London only sent slides from the first BMB to pathologists in the US, pathologists in the US said that they did not see any signs of dysplasia whatsoever, but they do not have the second BMB slides.

The reason they think that it may be a misdiagnosis is because my counts have all steadily increased since January 2012. Last November my platelets were at 60, hemoglobin at 10, and Neutrophils at 1. Last CBC my platelets were at 135, hgb 12.8, and Neutrophils at 1.5. My platelets have stayed above 100 and hgb above 12 since May. US docs said that the recovery in counts I have had simply does not happen with people who have AA or MDS. They believe that I have bone marrow toxicity as a result of taking Accutane last year. They also said that it is bizarre that one BMB would show no dysplasia and hypocellularity and a second BMB done two months later shows "significant dysplasia" and normocellularity.

In any case, I'm having a repeat BMB on the 12th to confirm. I don't know how hopeful I should be about this. If I get my hopes up about having bone marrow toxicity and then have MDS reconfirmed it would be rather crushing. Does anyone know anything about bone marrow toxicity? Does anyone know of cases in spontaneous blood count recovery in people with MDS?

Thank you for help, as always. I'm grateful for opinion and advice.


Catherine

[Marlene]

We were told that a small percentage of people with AA can recover counts with no treatment. I think it's about 20%. So yes, it does happen. Most docs will take a wait and see approach when the reason for the AA can be tied to a drug. It is possible for the bone marrow to recover once the offending toxin is removed.

[tom30]

Hi Catherine, My doctor originally said that he thought I had MDS but has since back off of that call and doesn't know what I have that is causing the low counts. He did say that MDS almost never recovers on its own. My counts have improved a bit but are not all normal. He also says that the deformities in my blood cells do not map to what is typically seen in MDS there are apparently certain things that confirm mds. Two other items are blasts which I do not have and genetic changes in the chromosomes which there is a lot discussed about on these boards.

As a side note, I have my son is just starting Accutane his doctor is starting him at 40 and is one of the more cautious doctors we've been to but many wanted to start him at higher dosages and gave no consideration to other methods. But with the scaring beginning we are on to accutane. I will say that I believe if I could control what he eats I think it would clear up but I just can't make headway on that front.

I hope you get good news...

[CatherineJ]

So my third BMB showed no dysplasia and 20-30 cellularity. My hematologist believes that I had in fact been misdiagnosed in London. I don't know how they could have messed up the diagnosis so badly. Perhaps they switched my slides with another persons. Still don't know what the cause of the hypocellularity is/was but my marrow appears to be improving on its own. My marrow was only at 5% last year.

[Neil Cuadra]

Catherine,

The RCMD diagnosis remains puzzling but the BMB report is just what you wanted to hear. Great results!

[lindajo]

It is possible that your bone marrow was injured and is recovering. There is a study paper about reversible MDS when there was a Copper deficiency in the blood.

MDS is a mystery. It is possible for it to reverse without treatment. Mine has been like a yo-yo since 1991. I have been to three centers
of excellence. Doctors disagree about whether to classifiy me MDS and which category. The only thing they agree on is watch and wait rather than aggressive treatments.

I hope your counts stabilize at the near normal limits and that you continue to feel well. Happy New Year.