Medullary Sponge Kidney (MSK)

[Suzig]

In 2005, I was diagnosed with Medullary Sponge Kidney (both of them) after two separate episodes of gross Haematuria.  About a year later I began experiencing headaches, fluid retention in my ankles, feeling very tired, not being able to remember things, constipation/diarrhea and a lot of abdominal pain that usually results in extreme bloating in my stomach. My stomach can bloat so much I look like I'm in early stages of pregnancy. When my PC doctor presses on my belly it's extremely painful.  I have had numerous tests - colonoscopy with biopsy (negative), SBFT (negative) abdominal flat plate x-ray (negative) all of which don't explain any of my pain. I'm feeling that because there is, so far, no medical explanation for my pain that I'm a little nuts. I've been put on Buspar even though I don't really care to be on an anit-depressant but feel I have to so the Dr's can rule everything out.  I was wondering if all of these 'symptoms' could be because of my MSK. I've looked high and low on the web and can't find too much to support my pain, etc. being caused by MSK.  

Could this be the reason for all of my negative tests and that this is just something I have to live with?  

Help...........thanks.

[Fay53]

sorry, skipped a beat - must be related to pain radiating down from the kidneys.  How common is MSK?  We've seen the new doc once, but haven't asked yet how often he's treated this.

[Fay53]

This is an old post but thought I'd give it a go.  My son has just been tentatively diagnosed with MSK.  We'd already discovered that he had elevated calcium levels (spiked upwards from 9.9 to 10.6) and he had multiple kidney stones, one of which required lithroscopy.  It just so happens that I had hyperparathyroidism and had a gland removed a couple of years ago, so I am familiar with elevated calcium and its effects.

I was convinced that much of the pain he was experiencing, the indigestion, small stomach erosions, irritability, etc. was also part of having high calcium levels.  If you read up on what patients with hyperparathyroidism say (stones, moans, bones, etc.), it will sound familiar to those of MSK sufferers.  The thing they have in common is too high calcium.  It is a 'nerve agent' so to speak and affects just about every area of our bodies.

I do think the groin pain

[platinumernurse]

I WAS DIAGNOSED WITH BILATERAL MSK LAST YEAR,I ALSO HAVE CROHN'S DISEASE AND INTERSTITIAL CYSTITIS. I AM CURRENTLY AWAITING A INNER SPINAL CORD STIMULATER FOR PAIN RELIEF AND INCREASDE KIDNEY FUNCTION. IF YOUHAVE QUESTIONS I AM AMY A ER NURSE IN SOUTHERN FLORIDA. YOU MAY ALSO CONTACT MY E-MAIL ***@****  due tO wAITING ON INSURANCE AUTHORIZATION I HAVE BEEN SUFFERING AWAITING THIS PROCEDURE WHERE I HAVE 2 INSURANCES. IT SEEMS UNFAIR nd days i wonder will i need diLYSIS DUE TO MY KIDNEYS PRODUCING MASS AMOUNTS OF KIDNEY STONES.....IT IS Scarey!!!!!!!!!

[MSKshelly]

I also have MSK!  There is a forum on this board for all our us MSKer's... search MSK under forums  I can not find the direct link!  There are many links to info and research on that board specifically about MSK!

Many of us have chronic "unexplained pain" or pain from the many calcifications in our kidneys and the chronic UTI"s that all come with the MSK!  My personal theory that has come through lot of research and my doctor, is that a biofilm infection has actually set up with in the calcifications in the kidney!  I have found a doctor that specializes in MSK and Chronic pain,,, he is using a new procedure to clear out the calcifications deep in our kidneys.  Right now I am scheduled to have that procedure done on Aug. 4th.  
I plan to post more infomation afterward!

I do hope you will join the MSK board!  You are not a lone.... and your pain is not in your head!

Shelly
PS  I had an IVP several months ago on a Thur. then passed a large 4x2mm piece of something...we think it was actually from the biofilm material, cellular not stone.  Because of this it also did not show on x-rays but sure cause a lot of pain and blood!!!!