HI as Cara said you are not alone there are many of us here with MSK. I am sorry to hear you have this and know it is scary esp. at first, but we can be here to help you!
I have to say I think we here on the MSK forum with Medhelp have the most complete and best research and information on MSK! I am glad you found us and hope you will join with us as we seek together to find solutions, learn what to expect and treatment protocols. Honestly, there is little research done on MSK so we have to work together to make a difference!!
Here is the link to our MSK forum here on Medhelp:
http://www.medhelp.org/forums/show/256?personal_page_id=30644
hope you will come over and join us. There are many good articles and info to help you as well. Infections are common with MSK since
the defects in our collecting ducts does not allow the urine to drain properly! In the healthpages are many articles on MSK and infection as well.
http://www.medhelp.org/posts/show/565929
We do also have new patient forum started and hope to have a researchers group up and running soon:
http://www.medhelp.org/forums/MSK-Medullary-Sponge-Kidney-Disease/show/391
I look forward to you joining us and working with us to help MSKers now and in the generation to come!!
Shelly