Medullary Sponge

I have recently been diagnosed with Medullary Sponge kidney in both of my kindneys after having a stone removed a few months ago.  My kidneys are full of stones, and I have frequent pain in both kidneys.  My doctor pretty much said there was nothing that can be done, and just go home and put up with it.  He said I will have this pain for life and I will continue to pass stones as well.  Anyone else in the same situation?  I am just looking for ways to cope with the pain.  Any help would be great.  Thanks.
toomanystones

[MSKshelly]

HI, you have come to the right place!  We actually have an MSK support group here on medhelp and the pain with MSK, that doctor's do not understand is often the heart of our conversations, research and seeking for answers together!   I also have MSK, chronic pain issues and more stones then can ever be counted!  YOU ARE NOT ALONE!

Here is the link to MedHelp's MSK support group:
http://www.medhelp.org/forums/show/256?personal_page_id=30644

I have also written an article in the healthpages that helps pull together the things we have found to help with the pain issues:

http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185

Here is the link to all the healtpages we have on that site, that have many great links to articles on MSK that might help you.

http://www.medhelp.org/posts/show/565929

I highly encourage you to join us and to help us work together to find solutions and support one another.  Feel free to pm me with any questions as well as if you want copies of articles to take to your doctor!

Again, welcome and hope to see you on the MSK board soon!  
Hang in there!  There is hope!

Shelly

[ChitChatNine]

Hi --- Shelly has given you excellent information indeed!

I have been diganosed with MSK for about 4 yrs now and go through periods of time where I seem to pass non-stop smaller stones + gravel or debris (which can hurt as much as a stone!!!) and then times of no pain at all which is wonderful!!!

My doctor suggested some medications to help ease the production of the stones. This is based on an analysis of my stones to date which are all calcium oxalate stones.  

Have you had yours analyzed?

Also, we've found that watching oxalates in your food as well as certain foods and keeping well hydrated sometimes help.

Please come on by our MSK Medullary Sponge Kidney community .. there's lots of members who can help you.

Many of us get repeated UTI's all the time, too & have trouble getting them diagnosed properly.

You may have to shop around to find a Doc you like that better understands this condition ... we probably have all been thru quite a few of them until we find the right one!

C~
MSK with stones