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Profile picture for asarnesejr @asarnesejr

Hi again - I'm the 60 year old that got diagnosed with low-risk MDS recently in August.

I went for a 2nd opinion at another hospital, and the Hematologist there felt that 3 weeks of B12 injections (153) was not enough to rule out a vitamin B12 deficiency. He felt low B12 could mimic my low WBC, ANC, large Red Cells, and lower Platelet counts. He is recommending that I go for a full 8-weeks on weekly B12 injections and see how my body responds. In his words, he is 'skeptical of the diagnosis'.

Does anyone have any thoughts to this? This emotional rollercoaster is putting me into a state of panic and depression. Now I have to wait till September 16th to find out if I have a life altering MDS or a B12 deficency.

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Replies to "Hi again - I'm the 60 year old that got diagnosed with low-risk MDS recently in..."

I'm right there with you. Seeing my hematologist on the 8th. I've had low platelets, and iron deficiency with an enlarged spleen. BMB came back with MDS SF3B1.

@asarnesejr You are on a rollercoaster! Those are vastly different diagnoses. You wondered why you had varying CBC results. I am not a Dr, but my results have varied especially if I was sick and possibly on other meds. A Dr can tell you why the variations. I do not understand the different diagnoses. The counts you posted originally were like a mirror of my own at different points. What did the FISH results show. It is important that you see a Hematologist who is also an Oncologist. If you can be seen by a a Hem/Onc at an MDS Center of Excellence that's even better. Did the 2nd Dr see the results of the BMB? Hem/Oncs don't pursue a BMB unless there is cause. Centers of Excellence: https://www.mds-foundation.org/community/centers-of-excellence/browse/?country=US

So sorry you have this going on. In my experience, low B12, as well as other factors can drive these numbers. I've had it happen, and turned out to be OK. Of course, they can always do a bone marrow biopsy to be sure, not the pleasant way to find out. But if they aren't seeing blast, they likely are thinking it isn't our old friend leukemia in some form. Best of luck!

I would like to know if there is a link I have the same let me know