Quote:
Originally Posted by Ulla
Hello
I have been using the MPD network for about a year, since I had a diagnosis of myeloproliferative disorder, ET. I had high platelets and low hemoglobin (around 100 hgb, platelets from 500 to 700. My hemo did not recommend any treatment besides aspirin. In April my hemoglobin dropped to 85 and I had a BMB which suggested RARS (those ringadings showed up) but since platelets were still too high, perhaps a myelodyplastic/myeloproliferative disorder. I have not got all the results about chromosomal changes. Again, in June my hemo said to watch and wait! I am sort of depressed, with great fatigue.
In Canada some of the newer meds are not available. May in trials? I am looking for another hemo for a second opinion.
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Ulla;
Hi, I am also from Ontario. I too have recently been dx with MDS/MPD Unclassified, but as of yesterday at Sunnybrook he said I am primarily MDS RA, that the MPD is minor.
I know what you are going through, the fatique is terrible, my hemoglobins are usually around 80 unless I've had a blood transfusion.
If you are not being seen by a Centre of Excellence like Sunnybrook, I would suggest that you do.
Dr. Wells the MDS specialist at Sunnybrook, is the most likeable, compassionate and friendly Dr. that I have ever met. He is also on top of all the lastest treatments etc.
PM me anytime, I know that this often appears to be a very lonely disease along with confusing. Maybe we could do lunch or coffee sometime and compare notes
Lynn