I am just looking for any new information on fsgs for someone who has tried just about everything that has been available to me.
I was diagnosed with focal segmental glumerolsclerosis in 1992 when I was 12. I began blowing up with up to 50 pounds of extra fluid at a time. From every drug treatment that was available to plasma pharesis-nothing stopped the slow disent into kidney failure. After a transplant from my mother in 98 the disease dicided to make its way into my brand new kidney-this took about 6 months and i barely had time to enjoy the transplant before starting my battle all over again. Now after trying many other drug treatments and all the forms of dialysis i am doing dialysis at home while I sleep at night. Nobody, including my doc seems to have any alternative treatments or even hope of me getting off dialysis or getting another transplant without re-occurence any time soon. Can anyone shed a little light on me?