Medullary Sponge Kidney Disease (MSK) Community
help me
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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help me

i was diagnosed with a severe form of msk 2 days ago. they described my kidneys to me as mush. needless to say i am completely terrified at the thought of diaysis and a transplant.. both kidneys are destroyed my right worse then my left. can anyone tell me what i need to expect in the coming months. im terrified havent been to kidney specialist yet but my catscan showed so much damage it was shocking. i get kidney stones all the time my body is mass producing them and i have gallbladder disease. im scared to death and really need some useful info cuz well the internet is b.s. when it comes to this topic bc they only explain what to expect if your fortunate enough  to be apart of the 90% that dont have serious complications waiting around the corner for them., thank you so much
tiff
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I'm so sorry to hear about the extreme difficulties you are having. I wanted to let you know that we have a support group on Facebook that will be very beneficial to you in regards to learning about MSK, what to expect, and treatment options that are currently available. Just type Medullary Sponge Kidney into the search box to find us. We have many exciting things going on to help raise awareness about MSK and hopefully to find new treatment options. Feel free to read my journal entries, and I have several posts on here about my current petition to help with this. YOU ARE NOT ALONE, and I hope you will join us.

Best Wishes,

Mary Maston
MSK Advocate; USF Tampa Project Facilitator
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