Medullary Sponge Kidney Disease (MSK) Community
Kidney removal in MSK
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Kidney removal in MSK

I have read that the non benign type of MSK that is left untreated & has severe symptoms can lead to the removal of  the affected kidney or kidney transplant. I can not find any statistics or case stodies. How often does this occur? What is the likelyhood or the percentage rate? Thank you for any help you can offer!  
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At least from the many have spoken most of the time the kidney is removed when
they can not find a solutions to the chronic pain issues.  HOWEVER, we have also seen that this is not a good answer, since MSK is rarely in one kidney only, so the remaining kidney is forced to filter 2x as much so also begins to fill with calcifications quickly
Though the sad truth is that eventually we could loose kidney function with MSK from all the calcifications this would take years..., and at least from my experience other issues come into play long before that happens.  It is my desire to start an MSK research group where we work getting research projects going to prove and study these issues.  Currently little is really know.  With MSK being benign in 90%, (my est. is much less) but anyway the number of us with these risk and problems is not in high enough numbers to catch the research dollars needed to study the long term risks etc.

That said this is what this site is about,.  working together to find solutions now and for the generation to come.  It is by being here, talking, study and networking that we
can truly make a difference in our lives and those that will follow!

I wish I had a more specific answer-but hope this will at least shed some light on it anyway!

Shelly
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