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Recently diagnosed with MDS

HomeForumsPatient Message BoardRecently diagnosed with MDS

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This topic contains 2 replies, has 3 voices, and was last updated by  Devon Grosskopf 1 year, 1 month ago.

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    Ashley Eddins

    I am 35 years old with a lot of health problems including the most recent findings like MDS and mixed connective tissue disease. After having a bone scan and an MRI of my thighs, I was referred to an oncologist for further evaluation. I was seen by the oncologist a few days later and I had to do a bone marrow aspiration the same day which was the most painful procedure I’ve ever experienced. I am awaiting the results of that and have an appointment scheduled for March 27. I have had tons of blood work done, but they are all normal for the most part. The MRI showed inhomogeneous appearing marrow of both left and right femurs. Infiltrative marrow process cannot be excluded. And the bone scan report stated there is an increase in the cortex along the femurs and tibias bilaterally consistent with hyperostosis. No focal lesions are noted. There are degenerative changes in the joints of the upper and lower extremities. Right breast hyperostosis of the bones of the lower extremity and arthritic changes without focal lesions. Does this sound like MDS or something else?


    Site Admin

    Dear Ashley, I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to In the meantime, you can also view this video I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us at 1-800-MDS-0839.

    Best wishes,


    Devon Grosskopf

    Hello Ashley,

    Im 33 and I was diagnosed with AML with MDS related changes in December 2016. When they get my blood work to check for leukemia it came back negative but the bone marrow biopsy it showed cancer. My platlates levels were the only thing that was low but previous to being admitted to the hospital I was getting infection after infection. So you did have a bone marrow biopsy? My biopsy came back after a week. When did you have yours? I hope you get some answers soon.

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