Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
I was diagnosed with-low risk MDS in June. Really had no symptoms at all. Routine blood test in April showed platelets and white count down. Retested in a month and counts were still lower. Referred to hematologist/oncologist. Did ultrasound of liver and spleen, then bone marrow biopsy. Confirmed low-risk MDS.
I've tried to research this on internet but seems most of what I have read refers to more advanced disease. Doctor had me coming for blood tests every 3 weeks but last time said I could wait 6 weeks.
My platelets are at 70. Bruises seem to appear from nowhere all the time. From what I've read don't need to worry until it gets down to 20-30.
Since my red cells are normal now, I don't have any of that extreme fatigue so for the most part I seem able to continue my life as before. I play a lot of golf and tennis.
If I understand correctly this may continue even for years but there's also the possibility that my counts could drop suddenly and my symptoms worsen.
I guess I'm asking how do you continue on trying to ignore this MDS but yet feel that it's hanging over my head at the same time?
Any thoughts from anyone out there?
I've tried to research this on internet but seems most of what I have read refers to more advanced disease. Doctor had me coming for blood tests every 3 weeks but last time said I could wait 6 weeks.
My platelets are at 70. Bruises seem to appear from nowhere all the time. From what I've read don't need to worry until it gets down to 20-30.
Since my red cells are normal now, I don't have any of that extreme fatigue so for the most part I seem able to continue my life as before. I play a lot of golf and tennis.
If I understand correctly this may continue even for years but there's also the possibility that my counts could drop suddenly and my symptoms worsen.
I guess I'm asking how do you continue on trying to ignore this MDS but yet feel that it's hanging over my head at the same time?
Any thoughts from anyone out there?
LaDawn
Yes, bruises come with the territory, especially with your low platelet count (mine is still normal). I'm also physically active, but sometimes pay for that with long naps.
As to how to deal with MDS hanging over your head, my own method is to consider it a "life-enhancing" disease. By that, I mean that life has become more precious, and I'm more attuned to living it to its fullest.
As LaDawn said, come join us on the New Member thread. The experiences of all these folks may not be yours yet, but it doesn't hurt to be aware of symptoms and treatments.