Myelodysplastic Syndromes (MDS), leg weakness & walking

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.

G’mornin’ @twitt1949 It can be really helpful to have someone with you at your appointments, whether at home with Teleconference in person at the office.

I know from personal experience that appointments are short, there is much to discuss and conversations jump from one thing to the next. So have your wife sit in and take some quick notes as your doctor is talking. In fact, for my Mayo appointments, even though I am entirely lucid (haha well, maybe not totally) it’s a requirement to have my ‘caregiver’ accompany me to appointments. That way there is an extra set of ears.

Doctors appreciate questions. But it’s important to actually have your questions and concerns written down on a piece of paper in front of you or notes on the phone. That way it’s easier to keep on task with brevity so that time isn’t lost.

If you’re not understanding something at the time your doctor is explaining, just say so! It’s ok to stop the flow. Just wave your hand a moment and say something like, “Just a sec, I have a quesiton about that, or what does that actually mean?” That type of thing. This is your health. You want answers.

As we’ve talked about before, MDS is a condition where the bone marrow isn’t able to keep up production of one or more types of blood cells. I may have posted articles for you before. But here are two that give pretty straightforward information on MDS. I seldom cite WEB MD but this is a comprehensive article that might be helpful. Then the other is from Cleveland Clinic.
Webmd:
https://www.webmd.com/cancer/lymphoma/myelodysplastic-syndrome-causes-symptoms-treatment
Clevelandclinic:
https://my.clevelandclinic.org/health/diseases/6192-myelodysplastic-syndrome-myelodysplasia
You asked about the results of your bloodwork. Keeping in mind that members in Connect aren’t able to interpret test results, diagnose or offer treatments. But we can use our personal experiences to offer assistance. So, with that being said, there have been some changes in your current numbers compared with previous results.
As you can see on your results, in the left hand column are the ‘normal’ levels for each type of test.
WBC (white blood counts) are lower which can leave you more prone to infections. That can mean airborne respiratory diseases but also fungal infections from air and soil, infections from cuts, etc.. So be mindful to avoid situations of exposure and maybe mask up if you’re out raking, working with soil, spending time indoors with people, etc.
RBC (red blood count) and subsequently the hemoglobin numbers are lower. Reb blood cells carry oxygen throughout our body. The normal hemoglobin levels for men are 13.5 to 17.5.
Your level is now 11.6. When levels of hemoglobin (Red blood cells) are lower than the norm, symptoms such as getting winded, legs feeling heavy, fatigue becomes more noticeable. At some point your doctor may suggest a medication which can help the body produce more red blood cells. If the hemoglobin level drops to a certain level then doctors generally order a blood transfusion to bring the number back up.
Similarly with platelets. As we talked about before, low platelets can have symptoms such as bleeding gums, unexplained bleeding, and such. If the level gets too low, the doctor can order a platelet transfusion.
The RDW on your test, is red cell distribution width. It’s a blood test that looks at variations in red blood cell size. A high RDW can be a sign of conditions like anemia, which is reflected also in your lower RBC and lower hemoglobin.

So you have a few things to talk about with your doctors.

@loribmt You mention maybe a transfusion of red, white or platelets. Just curious, how long does a transfusion last before I would need another one?

Good morning, @twitt1949 Blood transfusion for cancer patients are used when certain components of blood are low or not being produced in the body at a normal rate.
From my understanding, typically a transfusion of red blood cells is given when a patient’s hemoglobin reaches a low threshold of 7 to 8 g/dL. Depending on the circumstance some doctors will consider a transfusion when a patient reaches 9 to 10 g/dL. ( Normal adult male hemoglobin averages 13.8 to 17.2 grams per deciliter (g/dL).

I don’t remember what your latest hemoglobin reading was. But if it gets down around 10 or so, that may explain your lack of energy and endurance .

Platelet levels vary for infusions. Usually the lowest threshold is around 10 × 10⁹/L for non-bleeding patients receiving chemo. Higher for critically ill adults with active bleeding.

The frequency of the transfusions will be based on need. Red blood cells generally live in the body for up to 120 days, platelets only 7-10 days. If a patient’s body isn’t producing any red blood cells on its own, some people become completely transfusion dependent, requiring multiple transfusions weekly. Similarly with platelets.

However, patients with MDS who have decreasing blood levels, such as red blood cells, (anemia) are often given medications initially to see if anemia can be treated without infusions such as Vitamin B-12 injections, iron, etc.
There are also meds to help the body increase red blood cell production such as as epoetin alfa (Epogen, Procrit) or darbepoetin alfa (Aranesp)

Medications such as Neulasta can help promote the production of neutrophils (white blood cells that are crucial for fighting infections).

Are you taking any meds at all for your MDS?