[Marlene]

Mola-tecta,

Your post brought back a memory from our experience early on during diagnosis. I think you may be on to something regarding the communications getting lost in translation between your mom, the PA and the doctor. You never know how the PA is relating the information. They may be adding in their own spin on things.

John's first BMB was inconclusive so a second on was scheduled with sedation. The doctor told us he suspected SAA and if so, he would refer John to either NIH or Hopkins. On the day of the second biopsy, we asked the nurse if NIH/Hopkins would do another biopsy and if so, do we really need to proceed with this one. She stepped out to speak with the doctor and when he came in he was not happy. He said " I understand you want a second opinion". She completely miscommunicated our conversation to him. After clarifying what we were asking, he understood our concern and said yes they will want another biopsy and it didn't make sense to one now.

Your insights may be spot on regarding the PA.

I hope you can encourage your mom to switch doctors. I too would be worried about keeping her on the antibiotics for so long. It can take months for the digestive system to recover.