Which advice would you give to someone who has just been diagnosed with Medullary Sponge Kidney?

Do research, join an MSK group and find a good urologist and nephrologist

Do not be discourage and do not google or read blogs, look up Dr Goldfarb. He is the leading researcher and doctor in the field. Follow a healthy diet and exercise regimen as well as work with your doctor for what works best for you as each patient is different.

Try to stay positive, drink water and find support groups and others like yourself. People tend to look at us MSK'ers and say "but you don't look sick"...

The best advice I can give anyone that has just found out they have msk would be to go on your Facebook and search msk for any and all groups that support and can teach you about what to expect and or how to deal with any or all issues you may think could be caused mecause of this disease as it has many faces when it comes to the stages of the disease and your bodies health itself.. you will NEED!!! And I can’t stress enough the NEED of support to help you cope with the many different faces of this disease as ost people in the groups on Facebook have either been where you are with similar if not the same symptoms you are going threw right at that moment and will have large amounts of different things you can try to get you threw that emotional painful time in your every day life with msk... having that support is the #2 our ofbeverything you will need to a live with msk as #1 being drinking as much water as your able to every day for the rest of your life.

Be your own Advocate! Do not doubt your sufferings because others do not believe you. This can be a very debilitating kidney disease for some while others will have mild symptoms.