Which authority should you believe?

[MSK123]

I have recently been diagnosed with medullary sponge kidney. I have a follow-up apointment in about a week but until then I have been trying to find out information so I know what to ask about or tell the doctor about. I have not been able to find out much except that it is not supposed to hurt, which mine does tremendously, but I have seen posting after posting of people who are in pain from this. I keep seeing everywhere that it is nothing to worry about as long as you keep drinking plenty of fluids to keep the calcium buildup as low as possible and treat any infections or stones yet every search I pull up lists it under chronic kidney disease which is always accompanied by the words "failure", "transplant", and "dialysis". It is all quite contradictory and more than a little frustrating.
I have had microhematuria since at least November 05, a repeat CT lst month showed no new major calcium deposites and no new stones, and I drink two liters of water a day. Any ideas on where to look for a difinative answer?

[DoriSchatell]

Hi MSK,

What did we ever do before the Internet? I did a little sleuthing about this condition I don't know much about, and found some resources that you might find useful:
• A support group for folks with MSK: http://groups.msn.com/MedullarySpongeKidney
• The National Organization for Rare Disorders has a listing on MSK: http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Medullary%20Sponge %20Kidney. They also have a listing for medullary cystic diseases: http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Medullary%20Cystic %20Kidney%20Disease/Nephronophthisis
• A Free, full-length article on MSK in a medical journal: http://ndt.oxfordjournals.org/cgi/content/full/16/3/634

One thought--MSK seems to be a cystic disorder. You say you've been told it isn't supposed to hurt, but yours does. Polycystic kidney disease (PKD) is a much more common cystic kidney disorder that often does hurt. You didn't say how you were diagnosed, but I wonder if PKD is a possibility?

Remember, we're not doctors...I hope these resources will help you sort out what questions to ask. Is the doctor you're seeing a nephrologist (kidney specialist)? If not, I'd suggest that you get a referral to one.

[Beth Witten MSW ACSW]

You might also want to look at this thread to see if the information posted there is helpful.

http://www.lifeoptions.org/boards/viewtopic.php?t=104

[MSK123]

Thanks for the websites. I will check them out. Polycystic kidney disease was rulled out by the Urologist I was seeing because I had a CT in Jan and a follow-up in July and the cysts had not progressed much in size or number. I am seeing a Nephrologist. The diagnosis was made because of "numerous" calcifications and cysts on both kidneys on both CT's which were done because of microhematuria found in monthly UA's done since Nov 05 and continuing pain and the Urologist had ruled out cancer. Since he was out of ideas he sent me to the Nephrologist who made the diagnosis.
I have noticed that other postings I have seen have people saying they are tired of hearing "drink more water", I can tell you I use to drink hardly any water, mostly coffee and soda or juice. Since I started having the kidney pain I have been trying to drink 2L of water a day. While this is a bit of a chore, it does help. I only mention it because some of the postings I have seen say they drink 1L or less per day and I know the recommended intake is twice that. It takes some getting use to and it doesn't get rid of the pain completely, but it does help.

[Beth Witten MSW ACSW]

Glad you are seeing a nephrologist. I'm glad to hear that extra fluid is helping you manage your pain. The people who are posting that they have a fluid limit are probably on dialysis. Dialysis can only remove a limited amount of fluid each treatment. Those that are on 3 times a week hemodialysis must limit their salt intake to reduce thirst and their limit their fluid intake to 4-6 cups a day plus the amount that they urinate.