[MaryJ]

I am new to these forums. I have a 15 year old daughter who has FG Syndrome (variety of anomilies)...her blood counts have been dropping for about 8 years now but only within the last 3 years has it caught the attention of the doctors. She has had two Bone Marrow Biopsies that have not revealed anything very conclusive. She began suffering from symptoms of anemia (dizziness, fatigue, cold hands/feet) so she was put on iron which has helped to a degree. I am assuming that MDS is a progressive thing and in the beginning stages of it, it might not be clear what it is exactly....has that been others experience? Our local hem/oc has been very unhelpful! They do not seem to be interested in discussing with us any possibilities of what we are dealing with. We sent her BMB slides and reports to a Dr. at Cincinnati Children's and then to Texas Children's. Both places feel that she has mild AA or MDS but insurance has been unwilling to refer us out of the system...we are very frustrated! Just wanting to know what other's experiences have been through the diagnosis process.

Thank you