MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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  • in reply to: Low risk MDS patients who opt for no medical/drug treatments #49950
    Kim Sing Lo
    Participant

    I elected to avoid medical and drug treatment. I went onto alternative approach more than a year ago. My blood count held up at a steady level. My September 2019 lab result was WBC: 0.72, RBC: 2.64, Hgb: 9.5, Platelet: 19. I have been receiving acupuncture treatment once a week for a year. I have been taking a Chinese herbal capsule, Linzi, one capsule a day. My blood count deterioration stopped this past year. My September 2019 blood teat result is very similar to December 2018. My blood count deterioration started in 2015.

    I still have fatigue if over exerts myself like running with grandchildren for few minutes. I get light headed sensation if gets up too fast from the floor. I only follow up with my primary care physician twice a year. I didn’t get sick even though my grandchildren around me had fever and runny nose from flu this past year. I had no abnormal bleeding.

    Hematologist saw me every 3 months in 2015. 2-3 tubes of blood was drawn for testing at every visits. He also wanted bone marrow biopsy yearly. I stopped seeing the hematologist and MDS specialist, and picked the alternative approach. Because the MDS specialist in NY told me to live a normal life but follow up every 3 months with blood test and bone marrow biopsy yearly. There was no treatment prescribed.

    I have been lucky with the alternative approach. At least, I don’t have to suffer needle torture every 3 months. I am not trying to discourage other MDS patient to avoid the conventional approach. Just a different idea if you decide to go the alternative way.

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