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I’m a 59 yo female and I was diagnosed with MDS about 18 months ago and I suspect that I was suffering from it for 3 years or so prior. But one of the most obvious symptoms I initially had was the inability to walk any distance without getting winded, fatigued and having muscle pain. I wasn’t even able to walk to my car without these issues. This was troubling because just 5 years before I could have walked 3-5 miles without any problems even though I have back and joint issues. I’ve been receiving treatments since January of 2025; I have blood draws and Procrit injections every two weeks, routine iron infusions and take a lot of supplements each day. My oncologist has been reluctant to perform any blood transfusions or bone marrow transplants. But I still can’t walk any distance or for long periods of time. I need a grocery cart to walk from my car and throughout stores even if I don’t get anything. So your not alone.
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Hi @joyoushipsspine7 Offering my official welcome to Connect though I see you’ve been a member for quite a while. So happy to see you join in the discussion, especially to offer some reassurances and share your story with @twitt1949. That’s what Connect is all about!
It’s not easy when life forces us to slow down long before we’re ready. But your positivity with these changes is very inspiring. It sounds like you have a great oncologist who working with you to help keep you enjoying life. You mentioned receiving iron injections every 6 months or so. Does that seem to help your muscle pain?
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@joyoushipsspine7 I joy. You sound very much like myself. Although I can walk a little more. I might be able to walk around a foot ball field but about 1/2 way around my hips are hurting an my legs feel like clubs. I have had no treatments yet, only a bag of iron a couple months ago. I get a blood draw next week and see my new oncologist the week after.
Before I was diagnosed MDS, I had itching problems and my reg family doc sent me to a Dermatogist, and for 1 1/2 yrs he prescribed creams/saves (sp) but nothing worked. I had to see him the other day and told him about my MDS. We talked for a while and I told him that my Oncologist said I had 6-9 years before things might get bad. He said he is very aware of MDS and he has other patients with it because of itching. I don't know if he knows what hes talking about, but he said not to worry because he has heard that there has been much improvement and there are cures in the near future. I hope he knows but I don't know about that. Thank you for you post.