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Old Mon Apr 4, 2011, 02:43 AM
cathybee1 cathybee1 is offline
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Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
welcome Andy

Welcome to a very friendly and helpful group.

There are some informational materials available through this group (starting with http://www.marrowforums.org/mds.htmland also the AAMDS Organization that would be helpful to read before going to the specialist.

It would also be helpful to have possession of copies of test results and also the doctor's chart notes which should explain the diagnosis. If you have results of chromosomal tests, a bone marrow biopsy was probably done on you as well(?). If so, be sure to get copies of those reports too, and read them over. All this information will help you create questions specific to your disorder.

I personally believe this is one of those diseases where it is the patient's interest to be as well educated as possible.

There's a steep learning curve, well worth it. In the front end, it seems like too much information to digest, but eventually we all start talking like hematologists!
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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