Share Your MDS Story

My experience with MDS started in January, 2023. I had gone for bloodwork, ordered by my rheumatologist. She called me late that night because she was worried about my #'s. I was booked to see a Hematologist/Oncologist immediately.

Once meeting with my hematologist, he was concerned, and conveyed that concern, I might be dealing with Treatment Related MDS. Those words meant nothing to me.  I was booked for a bone marrow biopsy the next day. It was confirmed I had MDS. However, the only symptoms I had were fatigue and weight loss.

My Dr told me that there was an expected life span of "up to" 6 months. He told me to get my affairs in order, and that it was time to let significant others know.

Except my #'s didn't get worse. They kept bouncing back and forth, with my white blood count and platelets remaining low. Everything was wonky, but not emergent.

In March'24 I was sent to Vancouver General Hospital, Leon Judah Blackmore Pavillion. Another bone marrow biopsy - extraordinarily painful. My hematologist there is Dr. Stubbins. He told me I had been misdiagnosed, and that infact, I had Hypo-MDS.  Good news because longer survival rate.

I am extremely confused about my diagnosis. My husband has been researching, without my knowledge. There is so much information, but little on H-MDS. The results of my bone marrow showed almost no cellular activity in the sample. Getting the piece of bone was very difficult because my bone kept shattering. Very little serum. Hence the level of pain.

The only symptoms I'm dealing with are 20lb weight loss, and waves of extreme fatigue. I bruise easily.

The only treatment I have received is monthly bloodwork. Dr Szeto, my hematologist here, is simply waiting for my blood to get worse - to emergency levels. That's my story.