MDS and thin skin: What else to watch out for as time goes on?

Posted by tascamman @twitt1949, Mar 24 8:32pm

I am fairly new here and its been great, talking to people that can talk and post things first hand. I've posted a few times and I've come up with another question from people that have had MDS quite a while. I've been diagnosed with it about 2 months, or at lease thats when the determined I do have it. Personally I think I've had it for 2-3 years as I'm noticed changes in my body. All along I thought it was an old age thing (I'm 77). I've notice lately over the last few months that my skin has become thinner than it use to be. Old age thing?
As time goes on with MDS, As time goes on, what things can I watch for as far a changes as a result from MDS?

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hlmcneely | @hlmcneely | Mar 25 8:42am

Hi twit1949. I’m 77 also. Yes skin thin but think it’s age. I’ve just noticed my lower legs and feet ate more discolored. Kinda like bruising which I have all over. Tell people who ask about the bruising as rough sex. Some laugh others look at me weird. Still have a hematoma on my leg under my knee from bumping it 12/31/2025.

blakeman | @blakeman | Mar 25 5:52pm

In reply to @hlmcneely "Hi twit1949. I’m 77 also. Yes skin thin but think it’s age. I’ve just noticed my..." + (show)

@hlmcneely
Please will you both make certain that your CBC-with-a-differential blood work is normal?!?! I had probable MDS for years. One hematologist told me I had it (2024), but it was "too early" for a bone marrow biopsy. He retired and the next heme doc insisted I did not have it. But I got my primary care doc to order CBC's every 3 months (because I had shortness of breath and low red blood cells). And MDS easily turns into AML (leukemia).
Sure enough: 18 mos after the first doc suggested my MDS diagnosis, my white blood cells and platelets dipped down near zero. It happened VERY fast. I was half dead by the time my chemo started. My current oncologist (I love her, never mind that she was my same doubting-doc) now says I saved my own life by pushing her to do the marrow biopsy.
BTW, I was 77 y.o. when this happened. So be alert and ask for some oversight on that bruising! It is a warning sign for many leukemia patients. And the wait-and-see approach can be very harmful. Getting a CBC is easy, and it is cheap. And it is reassuring if all is normal!

hlmcneely | @hlmcneely | Mar 26 8:18am

Thank you for your reply. I get blood work every 3-4 months. Had bmb in 2022 and diagnosed with MDs now it’s mf. Been in wait and watch since the start.

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