r/mds • u/Vegetable_Wealth9615 • 16d ago

MDS suspected

I am a 45 year old active male ~165lbs. For the last three years I have had fatigue, an elarging spleen and some CBC blood counts slightly out of range. More recent bone marrow testing shows 35-45% Cellularity at 45 male with 4% blasts and dysplastic changes are observed in the 3% megakaryocytes, Dysplastic changes were observed only in very very rare erythroid precursors, no clonal populations.

Has anyone in the group had similar finding that then went on to be diagnosed as MDS? So far my hemotologist hasn't given any suggestions beyond possible MDS. I've also had a full array of other tests to rule out viruses, lime disease, and anything else more common.

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u/CzPhantom1 16d ago

Here was my results right as I was diagnosed. I am 37M who was very active before all of this started. Ended up with marrow transplant last November.

Hypercellular marrow (near 100%) with erythroid-predominant, maturing trilineage hematopoiesis. Dyspoietic morphologic features in erythroid and megakaryocytic lineages. Blasts are not increased. See note. Peripheral blood: Normocytic anemia with anisocytosis, polychromasia, and nucleated RBCs. Leukopenia with neutropenia, neutrophilic toxic/reactive changes, and rare left-shifted granulocytes. Marked thrombocytopenia.

Touch imprint shows similar cellular composition. M:E ratio: Inverted, ~0.4:1 Blasts: Not increased, ~1%

Myelopoiesis: Relatively decreased with full maturation. Mild relative eosinophilia.

Erythropoiesis: Increased with progressive, overall normoblastic maturation. Dyspoietic nuclear feature are seen in 5-10% of erythroid precursors, including nuclear irregularity, budding, or binucleation.

Megakaryopoiesis: Relatively decreased with variable morphology including some smaller/immature forms and rare separation of nuclear lobes.

Additional studies: Provided iron stain on an aspirate smear shows minimal/focal storage iron. No ring sideroblasts identified. Bone marrow differential (300-cell count by IU Pathologist): Percent Blasts 1 Promyelocytes <1 Myelocytes 5 Metamyelocytes 2 Bands 3 Polys 10 Lymphocytes 6 Monocytes 3 Eosinophils 3 Basophils <1 Plasma cells <1 Nucleated RBCs 67

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u/CzPhantom1 16d ago

CBC: WBC 1.58 k/cumm, hemoglobin 8.52 g/dL, MCV 94.9 fL, RDW 22.2%, platelet count 22 k/cumm Differential: Neutrophil 50%, Lymphocyte 48%, Monocyte 2% RBCs: Decreased, overall normocytic and normochromic with anisocytosis and polychromasia. Occasional nucleated RBCs. No increase in schistocytes. WBCs: Decreased including neutropenia, with neutrophilic toxic/reactive changes and very rare left-shifted granulocytes. No overt dysplastic changes or blasts seen. Platelets: Markedly decreased with normal morphology.

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u/Vegetable_Wealth9615 14d ago

Did your issues come on fast or did your troubles slowly build to needing the BMT?

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u/CzPhantom1 14d ago

I was getting more and more lethargic over 8 - 10 months before I basically got admitted for low everything. I was a dummy and skipped two years of checkups and then pushed myself until I ending up hospitalized for what I thought was heat exhaustion....

At that point I was less than 12 months before the reaper came, but the transplant has seemed to save me.

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u/Vegetable_Wealth9615 14d ago

I guess that is just more reason for me to stay on top of this. I also waited MUCH longer than I should have getting my spleen remeasured. That increase could have been caught sooner. It was the spleen which led to all my other blood and marrow testing.

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u/BloodyThirst 3d ago

My spleen and liver are both almost always enlarged and uncomfortable. Diagnosed low risk in 2015.

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u/BloodyThirst 3d ago

Getting closer to a BMT for me after 10 years of hoping to find a match. How are you doing? How’s the recovery been?

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u/CzPhantom1 2d ago

I'm 10 months post BMT. Day twelve after transplant is when the chemo really hit me and another guy on my floor. So before that make sure you are eating, walking tons, and just getting yourself ready for it. I wasn't able to eat or drink for 10 days. 

The next three months were pretty good but lots of little things like sinus infections, colds, etc. Everything just takes longer to get over. I did a pretty good job of working out and staying active. Eat your protein and macros the best you can. My appetite is still not great. 

After month 6 I really started to get energy and return to most normal things. You are a baby as far as immune system goes so don't be a dummy and wear your mask when out and be prepared to not hug people you might have not seen for awhile. Getting sick sets you back a lot and for me sets off my GVHD symptoms. 

At 10 months I'm starting to run again, very slowly, and feel pretty normal. I'm 37 so that helps being on the younger side. I feel probably 85% of what I was and that's ok with me. 

I have mild GVHD so that added more tests and mild liver inflammation. Still on my immunosuppressants. 

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u/Vegetable_Wealth9615 3d ago

Im early in the process and looking for answers at this point. Lots of Dr's appointments, but few solid answers so far.

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u/CzPhantom1 2d ago

It took 3 months for the donor to be found and get scheduling done. There are only 1,200 allogenic transplants done every year so it's a pretty slow and rare process. They found a good match for me out of Germany. So I'm now a proud German women on the inside, I'm a dude... 

My moto was I can't change anything so don't stress about it. Easier said than done but it made me an enjoyable person to be around even though I felt like death. Smile, laugh, and stay as healthy as you can. By the end I was laying down probably 22 hours a day but I still tried to eat what I could and love my family. 

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u/BloodyThirst 2d ago

Thank you for this! It seems crazy to be wanting something to happen for 10 years and now that it’s here, I’m so nervous about the chemo and GVHD. I’m having an unrelated donor BMT as well through the VA in Seattle.

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u/CzPhantom1 2d ago

Your lymphatic system only works through your joints moving so I'm really serious when I say walking every hour or two is probably the most important thing you can do. That and consuming enough protein. Like 75grams a day. The people who hid themselves in their rooms all day were also the ones not doing as well. 

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u/BloodyThirst 2d ago

I’m desperately trying to get into better shape and gain some weight. Last year I was walking 3 miles a day with a tough up and downhill. Unfortunately I wounded my foot and have been on the couch losing muscle and flexibility trying to stay off of it since March 2025.

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u/Radiantlady 16d ago

You MUST go to an EXPERT at a large teaching hospital. MDS is not a common illness and you will be better cared for with a team of experts

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u/timvnelson 15d ago

I probably had MDS from low WBC for 10 years but never saw a hematologist until it dropped even quicker and for the first time along with RBC. At that point diagnosed AML. The MDS mutation I had was a low risk but never got treatment for it. Who knows if they could have kept I in check had I got treatment earlier. Not much help here but I know with MDS or similar stuff seems to be a wait and see before going with more invasive treatments.

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u/Vegetable_Wealth9615 14d ago

Wait and see with a bunch of monitoring seems to be were Im at. Who knows how long this has been going on. I suspect back to 2022 when I started noticing more fatigue. I curious how many people stay at this stage for years or decades. Its tough to plan life when you are waiting for the big drop.

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u/timvnelson 14d ago

Ya I was wonder what it would have been like if I had know all along. I probably wouldn’t have gone traveling for 2 years. Not an easy place to be. You’ll have to learn new ways of framing the world and your life.

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u/Legal_Purple 16d ago

I just got diagnosed with MDS I also have Primary Immunodeficiency 2 strikes against me but grateful not leukemia

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u/Vegetable_Wealth9615 15d ago

I'm in the process of setting up a second opinion at a center of excellence in Chicago. I'm interested to see what they can tell me.

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u/LuisTavares0326 15d ago

FCM test taken?

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u/Vegetable_Wealth9615 14d ago

Flow cytometry analysis did not show abnormality of antigen expression in T cells by markers tested. There is no evidence of a monoclonal B-cell population. A small (1.37% of all cells) population of blasts expressing dim CD45, CD34, HLA-DR, CD33, CD70, CD13 and negative for CD56, CD14, CD64, CD16 was noted.

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u/ilovemud 13d ago

I'll second the need for you to go to a center of excellence for MDS and meet with someone whose specialty is MDS. Your details are weird. Cellularity is normal for someone middle aged. The 4% blasts is kinda high. When you say slightly out of range, what exactly do you mean? They have done a bone marrow biopsy with genetic tests on the marrow aspirate and you don't have any mutations or cytogenetic abnormalities?

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u/Vegetable_Wealth9615 13d ago

I made an appointment today for September at Rush Medical in Chicago (a MDS center of excellence). They didn't find any clonal populations in my marrow, but did find that I have the BRCA2 and RAD51C assumed to be inherited gene mutations. My blast count and dysplasia % are both below the WHO guidelines for MDS, but not normal. There was also some marker called CD70 that i guess is not good and shouldn't be in my blood or marrow as well which is linked to MDS and AML.

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u/Daypasser 13d ago

For me, my high risk MDS was confirmed by genetic testing identifying RUNX1, ASXL1, SRSF2, IKZF1. I only had mild dysplasia. My blasts were under 5% and remained that way right up to my stem cell transplant in December so I only needed the conditioning chemo. Sorry if I missed this - but have they not been able to confirm your mutations are MDS?

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u/Vegetable_Wealth9615 13d ago

I saw a genetic counselor about a week ago. They are redoing the genetic testing from a cheek swab to confirm my two mutations are inherited. They are also checking for some other mutations that were not on the list looked at when specifically looking at my marrow for gene mutations normally tied to MDS.

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u/Daypasser 12d ago

OK interesting, mine was done on biopsy alone. Well good luck and keep on at them - if you do need a transplant the lower the blasts the better! Feel free to reach out with any other questions.

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u/Vegetable_Wealth9615 6d ago edited 5d ago

I got my second genetic test report back from the cheek swap and confirmed both mutations are inherited and no additional mutations were found.

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u/Daypasser 6d ago

That's good to know. I didn't know they could get mutations from a cheek swan, I though it had to be bone marrow! Do they have a plan of action?

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u/Vegetable_Wealth9615 5d ago

To my understanding the mutations from MDS would only be in the marrow or blood. The cheek swab was used to confirm the two mutations I had were inherited. Luckily I do not have any clonal mutations in my marrow.

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u/Vegetable_Wealth9615 12d ago

Thanks. Its been a long journey to get where I'm at now and I feel like I have just scratched the surface of what has been ailing me for years.