Fibrillary glomerulonephritis

Posted by jennifer208 @jennifer208, Jan 22, 2020

I was just diagnosed with fibrillary glomerulonephritis. I have an appointment the 27 at the mayo clinic in Scottsdale. Has anyone ever been diagnosed with this. Would like info. It says stage 3 kidney disease on my paperwork

@va63

she isn't happy with lack of MD support and is looking for options. I shared this link with her and her daughter yesterday. They apparently heard of the trial and looking into it

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@va63 , that is a great start. Keep us posted!

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@jennifer208

Sorry haven't been on here for a while. But since I can't fly right now they expedited my medicine here to Idaho. I started my injections last Monday. I do them twice a week Monday and Thursday. Today was my third injection. I also take a pill in the morning and one in the evening every day. I will keep you guys posted

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Hello @jennifer208,

I was noticing that it has been a while since you last posted. How are you doing with the med that was expedited to you? When you last posted you had your third injection.

I would enjoy hearing from you. Could you post an update at your convenience?

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Has anyone that has been diagnosed with fibrillary glumerolunephritis also been diagnosed with a lung disease at the same time?

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@jennifer208

Ok sorry I haven't checked in. So my bone marrow biopsy came back negative. Great news. Bad thing is now we will probably never know why I got this. But I think I told everyone I was flying to Atlanta Georgia to see a doctor there about a clinical study trial. Well. Good news I got accepted. So next month I fly to Atlanta Georgia again to get my first treatment. I'm so excited. I really like this doctor and I believe it's going to be great. Now with that being said. All that's happening right now I'm praying they don't ground all flights. I need this.

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Can you explain how this can have something to do with this disease? I know already I am Iga deficient from my GI dr. Does any of that mean anything?

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