Diagnosed with Gaucher's disease

I recently was hospitalized with extreme pain in the lower right hand side of my abdomen, reaching around to my back. I had an MRI, CT scan, Bone scan and Bone Biopsy. The biopsy came back with foamy macrophages and was sent to the Children's Hospital in Seattle. There findings included "numerouse lipid containing macrophages present of the lytic bone lesion and raise the possibility of underlying storage disorder. The morphology of the cytoplasmic material is that typically seen in Gaucher's disease". My Lymphoid cells were CD138 scattered palsma cells positive, CD20 scattered B cells positive, CD3 scattered T cells positive. I have had numerous Lipid panel tests done, and was told that I needed to talk to a Lipid Specialist. I made an appointment and saw a Dr. Chaitt in Seattle. Needless to say I believe the appointment was a waste of time. He said he wanted me to take a 6 week diary and test my blood on a meter that he gave me and to find out family history on Hypoglycemia. I asked him what correlation this had to the test results and he didn't answer me. All he said was that he needed more data. My question is what kind of a doctor do I need to see, and what would the blood tests for Hypoglycemia have to do with the Gaucher's disease. I have chronic bone pain and sometimes my right side hurts so bad I could cry. I explained this to him and he never even addressed it. THis has been an ongoing problem since February 2008 and it is getting very depressing. I would like to know what I can do to be pro-active in my health.  Thank you - Rebecca

[dyna16]

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