FSGS sucks! That's just a simple fact! My husband found out he had FSGS in Sept of 2006. We started seeing a neph in July and it was August 30th he had a biopsy. With no family history (that we know of) we were shocked at the results "ADVANCED FSGS" He was in Stage 3 with a GFR of 36%. A year prior he had high blood pressure and was on Lisinopril seeing another doctor, who never said a thing about his GFR (maybe he didn't know either). He's never been sick, other than a common cold or hospitalized in his life.
Since then we've changed the neph and finally found an amazing one and his company changed insurance, so now we have another new neph, he seems really good, so hoping for the best.