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Old Mon Dec 3, 2012, 10:19 AM
CatherineJ CatherineJ is offline
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Join Date: Jan 2012
Location: London, United Kingdom
Posts: 29
Possible misdiagnosis? I need advice, please!

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
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25F, Dx RCMD MDS 1/2012, on wait and watch for who knows how long
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