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.

Greetings @rconnell22. Here are a few thoughts related to your "my symptoms haven't always lined up text book wise" and "any other cases like mine" comments just in case they're helpful to your situation. They are based on my wife's experience with Scleroderma (diagnosed in late 1987 by a GI doc at Creighton University Hospital in Omaha).

1. My wife has been a member of two different support groups over the years and actively tracks this disease on social media
- Common theme: She's never encountered two people afflicted by this disease with the exact same symptoms
3. Receives regular kidney-function checks... so far so good
3. It's a complicated disease for which there are no easy medical solutions... doubly difficult when it's being camouflaged by other physical ailments
4. Keeping pace with the Scleroderma intel, patience (with your docs) and persistence (with what you want) are hallmarks for success

Also, I highly recommend Dr. Griffing's video (see the link posted above by our moderator). His presentation, more than anything else I've seen/read these past 30 years, provided me with a clear picture of where my better half fits into the sometimes-difficult-to-see Scleroderma BIG picture. Wishing you all the best!

PS: If you peruse the comments tied to the above video, you'll see a post that includes readable copies of Dr. Griffing's visual aides (a bit difficult to see clearly in the video)

Hello @rconnell22 ,

I have no medical background or training but I'm pretty sure it's not uncommon to have multiple autoimmune diseases and I'm just as sure they are all difficult to diagnose. I don't know if it's a possibility for you but Mayo Clinic is extremely good at diagnosing difficult to diagnose health problems with their team of specialists working together approach. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:
-- http://mayocl.in/1mtmR63.

You might also find the following video helpful. What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
-- https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I was able to find some information that supports that there is a link between scleroderma and kidney disease.

John Hopkins Scleroderma Center:
-- https://www.hopkinsscleroderma.org/scleroderma/comprehensive-care/

Sclero.Org site:
-- https://sclero.org/scleroderma/symptoms/renal/a-to-z.html

The Kidneys in Systemic Sclerosis (Systemic Scleroderma) PDF link:
-- https://www.sruk.co.uk/media/filer_public/fe/ee/feee565c-d004-48c4-9fdf-522d6e813478/kidney_factsheet_v2_rgb.pdf

Hoping you find some answers soon.

John

@rconnell22,
I am a liver/kidney transppant recipient. My kidney failure was acute, a result of my liver disease. It is the current thinking that my liver disease is autoimmune related. I also have vitiligo, also autoimmune disease. So, I understand the autoimmune connection.
I am familiar with prednisone, tacrolimus, cellcept I take them as antirejection meds. I need to get my labs drawn regularly to monitor the level in my blood, because these can also be hard on the kidneys.

I don't know about FSGS Kidney disease, and don't know the progression with or without the sclerderma.
Are your doctors communicating with each other? Or is each 'doing his own thing'?
Have you considered getting an appointment at Mayo for another opinion? My personal experience with Mayo is that they do 'think outside the box'. I was never treated as a textbook case. Just a thought.

Looking forward to hearing from you, and learning with you.
Rosemary

@csjolundjr, Thank you for sharing.
Hugs to your wife.
Rosemary

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.

@rconnell22, It sounds like you and your doctors do have a plan for some next steps. I hope that that you and they will learn something that will lead to a manageable treatment for you.
We will continue to watch, with you, for other members to share their experiences with Scleroderma and FSGS Kidney Disease.
Keep in touch, and let us know what you learn.
Rosemary