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Possible MDS?

Home forums Patient Message Board Possible MDS?

This topic contains 3 replies, has 4 voices, and was last updated by  Chris Ballmer 1 week, 4 days ago.

Viewing 4 posts - 1 through 4 (of 4 total)
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  • #44791

    nicole curtis
    Participant

    Hello, Just wondering if anyone can provide advice or feedback. I have been waiting on my final results for over a month now. My Dr’s aren’t giving me any real answers and I am a nervous wreck not knowing what is going on. I am only 43 years old and other than feeling run down and minor aches and pains I was perfectly healthy. I saw a hematologist about 1 1/2 years ago due to a random blood testing showing high (think it was 23 at that time) WBC. He ran tests and showed nothing else was wrong with me so he said to see him back in about a year. Due to personal issues, I was not able to return to see him but I was feeling perfectly fine. Last month just after Thanksgiving I got sick, thought I just had the flu but my pulse was running extremely high so I went to the ER. I was in the hospital for 10 days from a sepsis infection. They ran all kinds of tests. I have no known infections but my WBC was high RBC low. Here is what my numbers were when I entered the hospital. WBC 30.3 RBC 3.07 Plat count 417 RBC dist width 22.8 absolute neut count 15.92 absolute mono count 1.57 MCHC 36.6 Hemoglobin 9.2 Hematocrit 25.2 Bilribuin 2.1 AST 5.8 ALT 67. My liver is enlarged 19 cm which is very large for women. I am waiting on the results of my second bone marrow test. All the dr’s will say is that my bone marrow showed ringed sideroblasts which is unusual in someone my age so that is why they ordered the 2nd test. When I look up all my test results it is looking like it may be MDS but I’m confused because it does not look like high WBC is common with MDS. I also thought it could possibly be CMML due to the high WBC and my enlarged liver. All my blood counts since came down or went up still slightly under or slightly over but I am on steroids to help control it. I am really beside myself will not have results until 1/9. I am out of work until they know what is going on and how to treat it. Just wondering if anyone has any advise or faced a similar situation. Thank you

    #44795

    Allan Romriell
    Participant

    Nicole,
    Can’t comment on all your concerns as my form of MDS is MDS with ringed sideroblasts and my Red cell are mainly effected. I have not had high white counts but my platelets have ranged from 75 to 157 over the last year and I/2. The presents of Ringed Sideroblasts seems to indicate MDS from what I know, and would contribute to your lower hemoglobin number as the RS cells are deformed and not as efficient as they should be. I hope they can give you some definite answers at your next appt. When I know what I am up against it helps to deal with it. Not knowing is harder to deal with. I wish you the best.

    #44810

    David Williams
    Participant

    nicole, your numbers don’t look so bad considering you had sepsis which can throw everything upside down. For example, you WBCs seem normal for someone with a likely liver infection.

    Your pulse was high because you scared yourself!

    You are a victim of your own runaway imagination. Your high RCDW is likely from iron deficiency anemia, which is easy to correct. Your mono count is low which is great. The RBC at 3.07 is not so bad and might even be caused by hemolytic anemia due to a drug you’ve been taking or due to a hyperimmune response caused by a food allergy.

    The only thing you need to worry about is how to stop worrying! I think you will be just fine! Look at this way, if there was a serious problem, your doctor would have already admitted you to a hospital

    Happy New Year
    David

    #44910

    Chris Ballmer
    Participant

    My thoughts: Find the best damn doctors including Naturopathic Oncologists, and work them out. Ask as many questions as you can. Do what you can, then go live and enjoy every day, since that’s all you got wether you have any disease or not…

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