You may remember a few months ago I posted about protein in my urine as well as slightly echogenic kidneys.
Well I have had my biopsy results and I am finding the results a little confusing. The official results were “immune complex-mediated glomerulonephritis with segmental glomerular scarring.” From what I understand this is usually caused by lupus, or some other form of auto immune or infection/virus. I have been tested for everything and every auto immune marker comes backs negative. My nephrologist can’t find any infection type of thing either. I am being referred to an infectious disease specialist - but the thought it that they won’t find anything either, they just want a specialist to confirm. I guess my nephrologist believes I had some infection or virus is the past that has since healed, and left the kidney damage? Is that.. a thing that happens? And I will likely just never know the cause? Any insight anyone has would be greatly appreciated!
Edited to add: my rheumatoid factor was actually slightly high, but my nephrologist said she wasn’t even sure that had anything to do with the kidney disease.
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Lihyu
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Auto-immune markers (such as ANCA) are not to be relied on for accurate diagnosis. What would concern me is that you may have an auto-immune disease, for example Wegener's/Granulomatosis with Polyangitis, that is currently not active (hence no auto-immune markers (ANCA, inflamation markers)), but has previously caused kidney damage. Most auto-immune diseases will have relapses and if this occurs, further damage to kidneys (and other organs) may occur. I would suggest you seek the opinion of a Vasculitis specialist.
I am not a doctor and would not venture into diagnosing according to your labs. But I can say this from experience. There is a connection to CKD and rheumatoid factors. And like other auto-immune diseases, it too can go into remission. I have Psoriasis and Psoriatic Arthritis, and actually had it for life. When I was a baby, they thought it was excema. It came and went. Then off and on aches and pains that were actually flares. But the damage was going on, including my kidneys. Then they finally diagnosed me, they found that PsA also changed my blood and it had high uric acid which formed huge stones. So it is all connected.
Yes, that is exactly what happened to me. I was diagnosed through biopsy to have "focal segmental glomerulus sclerosis (FSGS)" when I was 42 years old. Reviewing my medical background - I had a strep infection when I was 9 years old. About 2-3 months later I was in the hospital with nephritis (an inflammation in my kidneys). Some 30 years later I was diagnosed with FSGS. I am not diabetic and have no auto-immune disease. Since my transplant, I have had no other issues with my kidneys. So everything was due to the strep I had as a child.
Sorry to hear you aren't getting the answers you need from your tests. You have had some great supportive suggestions and advice here.
Have you ever had any other symptoms of an autoimmune condition that you can think of? May I suggest, if you haven't already, that you ask for a referral to a Rheumatologist? Maybe you will get some answers from the Infectious Disease Specialist but I would suggest a Rheumatologist would be worth seeing.
We hope that you get some answers soon and wish you all the best,
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