View Single Post
  #2  
Old Sun May 23, 2010, 10:00 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Rachel,

I'm sorry to hear that you have undiagnosed symptoms and that your hematologist thinks it could be MDS. Your red blood cell count isn't low, despite the larger red cell volume. Are your white cell count and/or platelet count low? Low blood counts and the symptoms they produce (fatigue, headaches, bleeding and bruising, infections, etc.) are what commonly lead doctors to suspect aplastic anemia or MDS, in which case a bone marrow biopsy and aspiration is used for confirmation and for a more precise diagnosis. Without those symptoms and unless you've had previous chemotherapy, I don't know why you'd be suspected of having MDS. I'm not a doctor but I'm puzzled about it. Did your hematologist explain the reason?

Are you considering getting a second opinion from another hematologist before undergoing further tests? If so, I suggest going to the James Hospital at Ohio State University where they have MDS expertise, rather than to a local doctor. Don't worry that it's called a "cancer center"; if anybody can rule out MDS, it would be the hematologists/oncologists there. If they don't think you need a bone marrow biopsy I'd certainly take their advice.

The BMB procedure itself causes mild discomfort to some people and is painful to others. The key is having the right analgesics and for the doctor or treatment center to take your concerns about pain seriously. If you end up needing one, I recommend that you ask about it ahead of time to know what they typically use and what choices you have. There's a good forum discussion about it in the Bone Marrow Biopsy thread.

MDS is indeed a scary diagnosis, although 5q- is one of the most treatable forms and researchers are learning more about MDS every day, but you've got plenty of reasons to be optimistic and not assume the worst. Let's hope you can soon forget all about MDS.
Reply With Quote