mesangiocapillary glomerolunephritis

[bluesgirl]

Have recently taken up looking (again) for facts on the disease the doc has told me I have. I have in all fairness had it explained to me in simple terms before, but being curious, I want more of the "technical" side of it, for instance, how does it look in the kidneys and so on.
Anyhow, when looking up mesanigocapillary glomerolunephritis, which I have been told that I have, I got the infor that there are several kinds of glomerolunephritis, and in medspeak the one I have is called  MCGN / MPGN Type 1, would this be correct? Also, it made me ownder how many percent of the population get this disease and how many percent of kidney damage is cause by this illness. Lots of diffcult questions, but since we have quite a few experts on here, I though I'd try my questions here. BTW, is there anyone here on the board that has this disease?

[kristina]

I have perhaps a similar disease called : chronic proliferative glomerulonephritis
with Lupus/SLE/MCTD (Mixed Connective Tissue Disease).

My chronic proliferative glomerulonephritis was diagnosed by a kidney-biopsy in 1972,
when I had recovered enough from a complete renal failure with uraemia and coma in 1971.

After the biopsy I was told  n o t  to have another biopsy taken because the kidney was bleeding profusely
and there were great complications because of it.

The biopsy-diagnosis showed my glomerulis were scarred and the tissue of my kidneys was “clumped up” because of it.

I  had been put on the transplant list in 1971 already, but after the kidney biopsy in 1972 the urgency was stepped up.

I have never been on dialysis and I have never had a transplant
and with my careful vegetarian diet my kidneys recovered to 40% function again
and have stayed like this until 2006 when I was told I was in ESRF.

My kidneys have stayed on a function of 10-12% for over 2 years now, no Dialysis yet.
I have fine-tuned my vegetarian diet and my kidneys seem happy about this.

To my knowledge there is not much research or medical knowledge how to treat glomerulonephritis.

Many nephrologists were curious over the years why my kidneys are still functioning
in spite of the chronic proliferative glomerulonephritis,
and they were very eager to use me for another biopsy, just to satisfy their curiosity.
I gave them no chance to conduct another biopsy
and I have not complied with several nephrologists who wanted to send me for dialysis,
and this has caused a great deal of friction between me and the medical profession,
in fact, it has become so bad that now I have no doctor/nephrologist/specialist to go to,
unless I pay lots of money (which I do not have)
and I have to pay already lots of money for my monthly private blood-tests
to find out my Creatinine, Urea, Sodium, Potassium,
which I interpret with the help of the Internet.

But I have stood my ground and my GFR is stable around 10-12%
(this month it has gone a little better to 12.3%)
and I have no physical symptoms of impending renal failure,
so I am going to fight on to keep my kidneys functioning
for as long as I can until the physical symptoms kick in.

Good luck from Kristina.

[bluesgirl]

thanks for your reply! I've got about 10 percent left now, and started at 20 when they discovered it in june last year, so in my case I feel like it's been progressing rather fast unfortunately. i have just had a fistual done two weeks ago, but am hoping to hold of the D until autumn since I havea trip to London and a theater-course I want to make in september and it would be inconvenient although hopefully not impossible to order "guest-D" in England

[bluesgirl]

no one else with MPNG?

[kristina]

thanks for your reply! I've got about 10 percent left now, and started at 20 when they discovered it in june last year, so in my case I feel like it's been progressing rather fast unfortunately. i have just had a fistual done two weeks ago, but am hoping to hold of the D until autumn since I havea trip to London and a theater-course I want to make in september and it would be inconvenient although hopefully not impossible to order "guest-D" in England

Hello, bluesgirl,
I do hope you can keep your kidneys going through your theatre-course
and I wish you very good luck with it.

Best wishes from Kristina.