Hi, My husband has FSGS, it was discovered about three months ago, due to the fact that he had no energy, swollen legs/feet/ankles, protein in his urine, extremely high cholesterol, high blood pressure and terrible cramps throughout his body, arms and legs.
It took three biopsies to find out what was wrong with him.
He has been put on medication which consists of CORTISONES, RAMIPRIL, LASIX and many other medications to reduce the protein, cholesterol, blood pressure etc and some Magnesium for his cramps. He has blood and urine tests every month which so far are showing a small sign of improvement.
He too was told that he could eat anything as it makes no difference, but he does try to avoid red meat.
Apparently it is in both his kidneys, is classed as a chronic disease and could lead to dialysis and then to a transplant.
We have no idea how he caught this, he thinks it was when he was a child and had a problem with his kidneys.
Hope this helps and wish you well.
i have FSGS too and have been told to reduce salt as it can increase the blood pressure which may worsen the FSGS. Also it can reduce the effectivness of the blood pressure tablets such as ramipril. As for information there isnt much out there I've looked.
good luck to you :)