Do I have MDS….?

[mld08]

I’ve been having intermittent fever and lower-than-normal RBC and hemoglobin since May 2024. This led me to a hematologist, who requested a bone marrow aspiration and biopsy. Based on the histopath results, I have slightly elevated plasma cells at 15% but no blasts were found. My MDS Fish Panel results showed positive 5q31 and 7q31 deletions. My recent CBC still showed anemia but note that my ferritin is high.

My primary hematologist said that with my results, the working impression is MDS, intermediate risk. She prescribed EPO for the anemia. She further suggested that I go to a rheumatologist and infectious diseases doctor to rule out any autoimmune condition and/or infection before any treatment can be planned out. Rheuma and infectious diseases doctors cleared me.

I sought for a second opinion and the doctor dismissed that I have MDS but may have clonal mutation of undetermined significance. She said that I may have abnormal chromosomes but not sick. She referred me to a nephrologist when she saw that I have elevated creatinine.

I just wanted to get feedback on my results as I’m confused at the moment. I hope you can shed light on my situation. I am 37y/o, functional but always tired.

Thank you in advance for your help. 🙂

[jebs554]

Hello mld08,

I had my bone marrow aspiration because of low hemoglobin and RBC count. My first hematologist diagnosed me with MDS.

I sought a second opinion, and did another BMB. The hematologist ruled out MDS and suspected that my immune system is attacking my bone marrow because of lymphocyte aggregate found on my specimen. My MDS fish panel were all negative.

It’s better if you can seek third opinion. Not all hematologist are expert on MDS.

By the way, I just turned 41,very young to be diagnosed with MDS.

[mld08]

hi jebs554,

I sought for a third opinion and this particular hematologist had the same opinion as the second one (no MDS but probably categorized as CCUS – clonal cytopenia of undetermined significance). She said that I may have Thalassemia given that I have low hemoglobin and high ferritin.

I was also cleared by the infectious diseases doctor and rheumatologist. The positive 5q31 and 7q31 deletions in my MDS panel remain a mystery to me.

I hope you get closer to knowing what your diagnosis is.

[jebs554]

Hello mld08,

How high is your ferritin and how low is your hemoglobin?

[mld08]

My ferritin is 594 ng/ml and hemoglobin is at 93 g/L. Sometimes, Hematocrit, MCV and RBC Distribution Width also fluctuate.

[Robert Sepe]

You have MDS “light.” There are many flavors and mutations… you got to get a handle on it.. Once it goes full blown.. outcome is not good,

[Ashley Moncrief]

Hello,

Just wanted to let you know that if you are interested in a second or even third opinion from a hematologist, we would be happy to help connect you with someone. Feel free to give me a call at 1-800-637-0839 ext. 210 or email me at amoncrief@mds-foundation.org.

Ashley

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