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May 3, 2018 · Scleroderma and FSGS Kidney Disease in Kidney & Bladder

Hi
Thank you for sharing your story. We have a really good Nephrologist who has been aligning all of the specialists and she has been a big advocate for us so far. We are trying to get a meet set up with some stem cell doctor's at Northwestern and if it falls through our next step is to try to set something up at Mayo. Right now we are in this spot where medications and treatments aren't working and we need to look at something new or different to try. We have been heard the term 'medical mystery' more then I can remember. We are also trying to get a full gene study done peding insurance approvals.

May 2, 2018 · Scleroderma and FSGS Kidney Disease in Kidney & Bladder

thank you very much, any info is appreciated

May 2, 2018 · Scleroderma and FSGS Kidney Disease in Kidney & Bladder

Hello, I am a 43 yr old female in NY. I was diagnosed with FSGS in September of 2016. I have never fit the mold of symptoms. I have been on prednisone now for nearly the entire 20 months and although it seemed to help with my creatinine levels it has caused me a lot of side effects. I have also tried tacrolimus, rimuxitab, cellcept and now cytoxin along with a lower dose of prednisone. The scleroderma diagnosis was finally given in August of 2017 and again my symptoms haven't always lined up text book wise. I have been told these two autoimmune diseases are separate and not linked and my doctor's haven't been able to find any other cases like mine. I am currently trying to get some doctor's in Chicago to see if I could qualify for a stem cell transplant for the scleroderma and my Nephrologist has said there is no supporting documents that she has seen to see of it will help my kidneys. My kidney function is continuing to get worse and I am close to going on dialysis I am told. The doctor's are stumped, I have a set of specialists in the city I live in and also last summer went to NYC and met with another set down there.

Apr 19, 2018 · Scleroderma and FSGS Kidney Disease in Kidney & Bladder

I would like to hear from anyone who has been diagnosed with both of these. Being told they are not correlated and doctor’s are stumped.