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Medullary Sponge Kidney Disease (MSK) Community
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MSK and Chronic Pain

Hi everyone,
  I just found out last month that I have MSK when I went to a nephrologist. I have been passing stones for the last 10 years usually 2 times a year. I recently saw a urologist and he was very concerned about my health after reviewing my scans. I have MSK in both kidneys and my left side is completely covered with large and small stones. The right kidney used to be just as bad but that is were all the stones have fallen from. I have had stents and Litho done. I am so angry that this was never communicated to me. I feel like my old urologist didn't know what he was doing and just treated me as problems came up! I have been complaining for years about the back  and joint pain. There were days I had to force myself to get out of bed even when I felt like i was hit my a Mack truck. I thought I was losing my mind. Now I am angry and I want any info I can get. My nephrologist told me I was the first person he has ever saw with this disease and I live in a small community in Illinois. I just want to make sure I get the best treatment I can. Please help!







4 Responses
592774 tn?1325393742
So sorry to hear it took so long for you to get the proper diagnosis. It took me 4 years and that was frustrating. 10 years is terrible.
You are on the right track by seeing a nephrologist. They will hopefully evaluate your urine to see why you are making stones. The MSK is a birth defect. It can't be fixed, but you can try to prevent more stones.
Some people, probably most, that have kidney stones embedded in the kidneys have biofilm infections around the stones. These do not show up in a urinalysis or culture, but are just bad enough to make you feel sick and achy. I take daily antibiotics that have helped me tremendously.
489228 tn?1291531454
I am so sorry to hear that and am sorry I just do not get in here very often. I am now a single mom and the posts never come to my e-mail so I get lost. PLEASE CHECK OUT THE HEALTH PAGES... and google MOARKIC
my personal e-mal address is on there and you can click on the link for MSK for a lot of articles and info too.,
489228 tn?1291531454
go to the healthpages on the top right hand side.  Here is the link:

http://www.medhelp.org/health_pages/list?cid=185

If you go to the healthpages, look for an article on MSK and pain, treatment options. There is an article that lists the treatment protocols

  you also want to look at the article on biofilm infections and MSK that will help explain some of the issues with you... hang in there and please read through many of the older posts...you will gain alot of knowledge
168348 tn?1379357075
COMMUNITY LEADER
How are you doing?  Thinking of you :)

C~
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