Fibrillary glomerulonephritis

Posted by jennifer208 @jennifer208, Jan 22 6:01pm

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

@jennifer208, I am glad to know that you have access to Mayo Clinic in Scottsdale in just 5 days. A longer wait than that would be troubling, in my opinion. I don't have personal experience or special knowledge about glomerulonephritis, but my best friend in college had the disease, and we sort of dealt with it together. That was 65 years ago, though, and I assume medical science has a lot of new therapies for dealing with your disease. Be assured that you're hooked up with the best medical specialists in the nation, and they will ask you to give them your full attention and support in addressing this malady.
Martin

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@predictable

@jennifer208, I am glad to know that you have access to Mayo Clinic in Scottsdale in just 5 days. A longer wait than that would be troubling, in my opinion. I don't have personal experience or special knowledge about glomerulonephritis, but my best friend in college had the disease, and we sort of dealt with it together. That was 65 years ago, though, and I assume medical science has a lot of new therapies for dealing with your disease. Be assured that you're hooked up with the best medical specialists in the nation, and they will ask you to give them your full attention and support in addressing this malady.
Martin

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Thank you so much for your info. I really appreciate it

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@jennifer208 Welcome to Mayo Connect. We are a diverse group of people, patients, family members and caregivers alike. We cannot diagnose, but we do offer our experiences and support to others on similar journeys. As a rare kidney disease patient myself, I know how mystifying it can all be. Here is information from the Mayo Clinic website https://www.mayoclinic.org/diseases-conditions/glomerulonephritis/symptoms-causes/syc-20355705
It appears there is a nephrologist on the Mayo campus in Arizona who treats this, and you may very well be referred to him [Musab S. Hommos, M.B.B.S.]
How are you feeling today? Was it a long journey to diagnose your condition? Please keep in touch with us, and let us know how we can help you.
Ginger

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I also have this same disease and am currently stage 4

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@jennifer208 Is your appointment today? I hope you can gather some insightful information!

I have an ultra-rare kidney disease also, diagnosed in 2015, called Type III Collagenofibrotic Glomerulopathy. There have been less than 50 patients in the world. There are collagen fibers depositing on the filtering components of my kidneys. Right now I am Stage 3b, and trying to hold my function as well as I can by diet and lifestyle.

We will be looking forward to hearing from you.
Ginger

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@vhussey29

I also have this same disease and am currently stage 4

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Hi @vhussey29, welcome to Mayo Clinic Connect. How long have you had glomerulonephritis? How are you doing?

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@colleenyoung

Hi @vhussey29, welcome to Mayo Clinic Connect. How long have you had glomerulonephritis? How are you doing?

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Not sure. Was diagnosed on Jan 10. But I'm trying to find clinical research on it.

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@gingerw

@jennifer208 Is your appointment today? I hope you can gather some insightful information!

I have an ultra-rare kidney disease also, diagnosed in 2015, called Type III Collagenofibrotic Glomerulopathy. There have been less than 50 patients in the world. There are collagen fibers depositing on the filtering components of my kidneys. Right now I am Stage 3b, and trying to hold my function as well as I can by diet and lifestyle.

We will be looking forward to hearing from you.
Ginger

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So I go Feb 14 to my nephrologist here in Idaho the 14 of February. I don't know what she's going to do. But when she told me she said as of now there's no treatment available. The Mayo clinic told me to get a bone marrow biopsy. Can't do that til the appointment with my doctor. So I'm searching to see if there are any clinical trials research out there for my disease. I also was told it's very rare

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So I was diagnosed with fibrillary glomerulonephritis in Jan. I had a check up today hoping I would get news of what's causing it. But my doctor said she doesn't know and will monitor me every three months. I went to the mayo clinic in Scottsdale end of Jan and they said I should get a bone marrow biopsy. So today I asked her if we could do it. She said she doubts that it will say anything but she did put a request in that I get one. So now waiting to get that. I guess I'm just frustrated because I'm told my kidney function will decline and if we have to do dialosis we will. But why can't we fix it

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@jennifer208

So I was diagnosed with fibrillary glomerulonephritis in Jan. I had a check up today hoping I would get news of what's causing it. But my doctor said she doesn't know and will monitor me every three months. I went to the mayo clinic in Scottsdale end of Jan and they said I should get a bone marrow biopsy. So today I asked her if we could do it. She said she doubts that it will say anything but she did put a request in that I get one. So now waiting to get that. I guess I'm just frustrated because I'm told my kidney function will decline and if we have to do dialosis we will. But why can't we fix it

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Hi @jennifer208, I moved your latest message to the original discussion you started on glomerulonephritis so that you can stay connected with the members who know your story. Jennifer, did the doctors at Mayo Clinic explain what a bone marrow biopsy might be able to indicate? Are the Mayo doctors coordinating with your local doctor?

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@colleenyoung

Hi @jennifer208, I moved your latest message to the original discussion you started on glomerulonephritis so that you can stay connected with the members who know your story. Jennifer, did the doctors at Mayo Clinic explain what a bone marrow biopsy might be able to indicate? Are the Mayo doctors coordinating with your local doctor?

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They are not. I have a phone appointment Monday with the Mayo clinic in Minnesota

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@jennifer208

They are not. I have a phone appointment Monday with the Mayo clinic in Minnesota

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@jennifer208 We will be interested to hear what the doctors have to say, after your appointment on Monday. Good for you for sussing everything out and getting that appt so quickly! @colleenyoung, if the indications are there, the reason for a bone marrow biopsy in this situation might be to rule out IgA nephropathy as spoken about in my previous post here on Jan 23.
Ginger

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@gingerw

@jennifer208 We will be interested to hear what the doctors have to say, after your appointment on Monday. Good for you for sussing everything out and getting that appt so quickly! @colleenyoung, if the indications are there, the reason for a bone marrow biopsy in this situation might be to rule out IgA nephropathy as spoken about in my previous post here on Jan 23.
Ginger

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I will keep you posted.

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@jennifer208

So I go Feb 14 to my nephrologist here in Idaho the 14 of February. I don't know what she's going to do. But when she told me she said as of now there's no treatment available. The Mayo clinic told me to get a bone marrow biopsy. Can't do that til the appointment with my doctor. So I'm searching to see if there are any clinical trials research out there for my disease. I also was told it's very rare

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I have been on your same journey since Oct 2017 and just found out Friday I am now eligible for transplant evaluation.
I visited Mayo Rochester in Apr 2019 and was also told there is no cure and very rare.
I have had 4 Rituxin treatments and felt so much better until they no longer seemed to help.
I have figured out (after repeatedly asking for diet information and not receiving any) that diet is a big factor in feeling better. I met with a dialysis nurse/dietician who was of great help and gave me info on what NOT to eat.
I wish you all the very best on this journey!

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@vhussey29

I have been on your same journey since Oct 2017 and just found out Friday I am now eligible for transplant evaluation.
I visited Mayo Rochester in Apr 2019 and was also told there is no cure and very rare.
I have had 4 Rituxin treatments and felt so much better until they no longer seemed to help.
I have figured out (after repeatedly asking for diet information and not receiving any) that diet is a big factor in feeling better. I met with a dialysis nurse/dietician who was of great help and gave me info on what NOT to eat.
I wish you all the very best on this journey!

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Thanks so much for sharing. I actually ordered a cook book on Amazon strictly for kidneys. As for the treatment you received I was told my insurance wouldn't cover it. So I feel like a sitting duck

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