MDS is a bone marrow failure disorder

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Recently diagnosed with MDS

HomeForumsPatient Message BoardRecently diagnosed with MDS

Tagged: , ,

This topic contains 2 replies, has 3 voices, and was last updated by  Devon Grosskopf 6 months ago.

Viewing 3 posts - 1 through 3 (of 3 total)
  • Author
    Posts
  • #31918

    Ashley Eddins
    Participant

    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?

    #31919

    Site Admin
    Moderator

    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 http://www.mds-foundation.org/mds-centeres-of-excellence/. 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 patientliaison@mds-foundation.org. In the meantime, you can also view this video http://www.mds-foundation.org/bboh/. 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,
    Audrey

    #31925

    Devon Grosskopf
    Participant

    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.

Viewing 3 posts - 1 through 3 (of 3 total)

Register for an account, or login to post to our message boards. Click here.

You must be logged in to reply to this topic.

Review answers to commonly asked questions or get answers to your questions from an MDS expert