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Old Tue Dec 28, 2010, 06:02 AM
akita akita is offline
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Join Date: Nov 2010
Posts: 110
Lindy and Dan,

sorry i did not read your recent postings before responding to Dans posting of yesterday..

What concerns the age i think a differential - diagnosis for MDs has to be done before starting an ITP-Therapy. In the Consensus Report ITP 2009 MDS is listed under the differentialdiagnoses.

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See again:

International consensus report on the investigation and management of primary immune thrombocytopenia

http://bloodjournal.hematologylibrar...full/115/2/168.

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The relatively young age for the onset of MDS - most people are older is a special risk factor. If you get MDS when you are young there could be special reasons for that and you might be in a situation of difficult/poor prognosis. E.G. in case it would come out that you have mutations or a secondary mds. in my case nobody came to the result that i should have an investigation for MDs, because my blood counts seemed to be normal for years before diagnosis. I had subtle changes in my peripheral blood accounts which would have been considered as relevant for further diagnosis if a hematologist would have seen me. So i experienced years of undiagnosed MDS and it was detected only as it was really late - after conversion to AML. i was very tired in these years, running from doctor to doctor for the correct diagnosis but i did not consider a blood desease.So i was diagnosed with sleep apnoe syndrome (for which also the differentialdiagnosis for anemias should have been made was was not done), made a rehabilitation cure for my asthma. My capability to work decreased and a had therefore financial problems which i otherwise would not have had. But i do not know which treatment they would have given to me if the MDS would have diagnosed earlier. The situation in the hematologic ward, where i got the polychemotherapies to prepare me for the SZT was under time-pressure and many risks i would not have experienced if the correct diagnosis would have been done earlier. For example it was not possible to me to find a matched donor in the short period before the necessary transplantation, my lady-donor was mismatched, and that caused a high probability of dangerous Graft-Versus-Host-desease. I got this and survived after having stayed in hospital after SZT for 10 months...I could report further details to this problem - complex...

So i vote for an early correct diagnosis for these blood deseases..

Regards,

Margarete
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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