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Medullary Sponge Kidney..?

Posted: Mon May 30, 2016 8:13 pm
by 5hredder
Hello everyone..
I'm Rory, aged 46 and am from Manchester, U.K.

I've been having severe pain in my left kidney for around 10 years (like I've been punched in the left kidney to a point where I can't breath - even if I've put off going to the toilet for as little as 30 seconds). After speaking to my doc about it 3 years ago have been trying to get to the bottom of my symptoms.

To cut a long story short, I was originally diagnosed with kidney stones and went through 3 sessions of Lithotripsy which resulted in absolutely no change what-so-ever. The consultant I was seeing at the time shrugged his shoulders at me when I asked "..if it isn't the kidney stones that are causing my pain, what do you think it might be?"

I asked for a second opinion, and I have now been diagnosed with Medullary Sponge Kidney. This consultant reckons I've never had kidney stones at all, and that I have small calcium deposits in the meaty part of the organ.

I'm due to see him again on Wednesday morning as a result of further CT and MRI scans.. the letter states that my right kidney is functioning at 27%, while my left kidney - the one that hurts - is functioning at 73%. Apparently there's not much he can do other than keep an eye on it and give me pain relief for the pain.. funny thing is, he (as has everyone in the past) thinks the pain must be in my right kidney.. it's really, really not though.

I'm just stuck I suppose, and came here looking for some answers, advice, questions I should be asking etc.

So many people on here are in so much more serious trouble compared to me, I feel I'm small fry in comparison. But that's my story so far, and I honestly would love to hear from anyone who might be able to help me.

Re: Medullary Sponge Kidney..?

Posted: Mon Sep 19, 2016 10:38 am
by bigbuzzard
Hi Rory

I just happened across this post and see that nobody ever replied. That doesn't mean you're in the wrong place at all, just that it seems to be a rare condition. I did a quick search, and Medullary Sponge Kidney has only been mentioned a couple times before: http://kidneypatientguide.org.uk/forum/ ... ary+Sponge

I guess that since you posted back in May you've found out a lot more — how's it going now?

bb