Fibrillary Glomerulonephritis

Posted by mainedeb @mainedeb, Nov 9, 2022

Hello,
I have just been diagnosed with FGN and I’m seeking anyone else who has this or any information that anyone can give me.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

robinm1107 | @robinm1107 | Sep 7 7:29pm

I was diagnosed with Fibrillary Glomerulonephritis (FGN) a year ago.

Ginger, Volunteer Mentor | @gingerw | Sep 8 5:14pm

In reply to @robinm1107 "I was diagnosed with Fibrillary Glomerulonephritis (FGN) a year ago." + (show)

@robinm1107 Welcome to Mayo Clinic Connect! What has your nephrologist determined will be the course of action for you? If you are comfortable sharing more, I'd like to hear your story.
Ginger

robinm1107 | @robinm1107 | Sep 8 5:44pm

Presently, I have a great nephrologist at KU Med Center And I’ve never been to the Mayo Clinic. However, my first visit will be on October 7 and 8th. I have a super rare disease and a clinical trial recently opened up. I am being assessed for that clinical trial and getting a second opinion on the disease. I will be seeing Dr. Zand when I go there.

dordor14 | @dordor14 | Sep 9 10:03am

I also see Dr Zand for my FSGS different diagnosis but also rare. I really like her. She’s clear and very approachable with questions. I hope you have a good experience !!

joannzerbo | @joannzerbo | Sep 28 8:40pm

I have the same and will be starting a trial drug next month also looking for more folks like us

rickorock | @rickorock | Oct 17 5:36pm

I also have fgn and did not do the trial with Mayo Clinic and now I’m thinking I probably should have. For you that are doing the trial please let me know how it goes for you. Thank you so much. Rick in Southern California