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Just diagnosed Stage 3 CKD: Should I be referred to a nephrologist?

Kidney & Bladder | Last Active: Jun 28 2:35pm | Replies (110)
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@katiekind

Hi Ginger, I know it has been years since you posted this, but could you mind telling me what the rare autoimmune disorder turned out to be in your case? Someone I love is going through something remarkably similar at the moment and the doctors are having trouble diagnosing what the autoimmune disorder may be.

I appreciate your help with this if you are still around!

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Replies to "Hi Ginger, I know it has been years since you posted this, but could you mind..."
Ginger, Volunteer Mentor | @gingerw | Jun 28 1:49pm

@katiekind Welcome to Mayo Clinic Connect!

Yes, I am indeed still around. The cause of my kidney disease is Type III Collagenofibrotic Glomerulopathy. There is a fibrinous collagen buildup in the filtering components of my kidneys, essentially and eventually shutting them down. There have been less than 50 people diagnosed with this condition. At this time I am on daily dialysis, as of September 2022.

Autoimmune disorders are difficult to pin down, as they seem to mimic several conditions. Has your loved one been able to get to Mayo Clinic, or a large teaching hospital, for help? I know it can be frustrating to get it figured out. Keeping a journal of symptoms helps the medical team to narrow things down, I found out.
Ginger

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