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Medullary Sponge Kidney Disease (MSK) Community
515 Members
Avatar universal

Finally someone else who has medullary sponge kidney

How come this can cause so much pain and discomfort i am 30 and i have been going through this since i was 17. what can i do to get some help? i have been to a urologist and a nephrologist  i feel like there is no help[ in sight!!
2 Responses
489228 tn?1291535054
Peaches
As I mentioned I am not a doctor but a patient and can only share with you things we have found that helped me and others

MSK is not the benign disease that medical journals say..... the small cysts in our kidneys do not allow the urine to drain properly, so infection and stones are a pattern of life. Then  over time a low level biofilm infection can set up in there causing pain that is often unexplainable by standard tests.

The good  news is you are not alone.. read the many posts before you.... then look at the health pages
Here on the med help board, right hand corner. There are many articles and info to help you, especially some about the chronic unexplained pain.  I have a IC support website that I also use as a place to have available to MSKers some articles and info. Including some I have written. It is MOARK IC and you click on the menu item for MSK. We are not allowed to post direct links off the med help board or e-mail address for safety issues.. I also can not post many of the full text articles I have on MSK since they are paid articles that many of the researches gave to me etc. to help us. BUT if you send me a private message I can share more of the info with you. Just let me know if it is info on MSK, not IC you need.

WELCOME ABOARD and I believe you will find a great deal of support and info here!

Shelly
168348 tn?1379360675
COMMUNITY LEADER
Hi - you have come to the right place.  All of us on this community have MSK in varying degrees ... WELCOME~!

C~
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