MDS is a bone marrow failure disorder
MDS is a blood cancer
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Viewing 106 post (of 106 total)
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  • in reply to: New to MDS #11576


    Thanks so much for your reply. I really appreciate it! I am so grateful to have found this forum, as I know of no one else with MDS.

    I am going to give you more background and hopefully respond to your questions as well.

    Mike, my husband had a kidney stone attack on the morning of Aug. 1, 2005. (He took an early retirement in May, 2995) During his emergency room treatment, they found that his blood counts were very low. The quest for cause began.

    We do have a hemotologist here, and we travel to the Clarian Transplant Center in Indianapolis, In. which is actually the University of Indiana MDS Center of Excellence. Dr. Cripe and his associates are wonderful.

    Our quest has been long. Mike underwent a total of 4 Bone Marrow Biopsies, and unfortunately, to this date, we do not have a clear slide for the pathologists to count blasts. (None of these were done at Clarian, but at our local hospital.)

    They do intend on doing a new one in the near future at Indiana.

    We have only received “guess” estimations on blasts ranging anywhere from 5 to 10 % in marrow and none in periperal. Since this is one of the, or the, hardest diagnosis to make, I still don’t feel totally sure that MDS is it.

    I have done almost continuous research since MDS was mentioned to us. During that time I did find that there are those who think that Parvo Virus can imitate and have a causative effect similar to MDS. Therefore, I requested that an Antibody B19 Test, an IGM and IGMM Test be performed. They are going to do that in Mid March.

    Mike also was on two medications that can cause pancytopenia. Triamterene and Zoloft.

    His WBC is 1.5, RBC 2.60, Hgb 8.9, Plt 80 (had been running at 100 until this week). We still get blood tests every two weeks.

    We have been told to take only a multivitamin and not to take any other herbs or supplements.

    I have been reading where others are taking some additional supplements.

    I have been a “Pit-Bull” Advocate for Mike and have spoken to other Dr.s about some of the questionable spots in this diagnosis.

    Revlimid sounds exciting, but don’t know if this will be in Mikes future or not.

    Sorry to ramble.

Viewing 106 post (of 106 total)



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