Medullary Sponge Kidney Disease (MSK) Community
Recently diagnosed with MSK, confused how to manage this.
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Recently diagnosed with MSK, confused how to manage this.

Hello,

  I am 28 years old and I recently was diagnosed with MSK.  Ive had kidney stones for over 7 years but this has just been brought to my attention.  When I started having stones it wasnt frequent, the first was surgically removed and I didnt have another for almost 2 years.  It stayed pretty sporadic until about a year ago.  As of now I have been getting them every 8-12 days.  My kidneys are always inflamed, Ive recently had a bladder infection, and its just horrible to live with.  I am a good water drinker and have done lots of research as to preventing stones.  I have not been successful.  I asked my Urologist about doing a Lithotripsy and he said I wasnt a candidate because my stones are too small.  That is frustrating to anticipate that I will have to experience each removal one by one, and there are about 50 between both kidneys.  I am awaiting the results of my parathyroid test which I think may come back positive due to the number of matching symptoms.  How have you, the others who live and cope with Medullary Sponge Kidney, learned to keep the pain minimal? I am a mother of 2 small children and run my own business.  Ive also had to decrease my other commitments due to being in so much pain all the time.  What advice can you offer me?  Thanks.  Painful in Prineville.
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Breeanna,
       Welcome, {HUGS}, you are among friends! This is the right place to find help and support!   There is many articles and great info in the Healthpages on the right hand top side of this forum.

Together we are also seeking and have found some solutions for dealing with the kidney pain and MSK!  Having pain, that doctors can not explain when we have no stone in the ureter and no infection showing on standard tests or cultures, is sadly typical for us..  There are several reasons for that, and YES WE DO HAVE PAIN FROM THE STONES IN THE KIDNEYS.  I would encourage you to send me a private message with your e-mail address and I will send you some information, or pdf articles that might help you too.

I also have an article on our MOARK IC website on MSK and biofilm infections.  Honestly with the rate and size of stones you are making you very well make have infectious stones, that are the result of biofilm infections  Right now I know that is most likely all Greek to you but I will help you to understand the best I can.  I have lost count of the number of MSK patients just like you I have spoken too over the last 2 years, I am sure it has been 100's!

  Here is a link to an article I put together on some options we have found for treating the chronic pain issues::

here are also some specific articles on MSK and pain in the health pages here:
http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185


One of the biggest things that really is growing in acceptance is getting your Vit D levels checked. So far all but one of us with the pain and problems has been very low.  

Again, Welcome glad to have you aboard!  There are many great people on this site
and I hope you will hear from them also soon!  Keep in touch and like I said pm me with an e-mail address and I will send you some articles as soon as I can.  Unfortunately, I am personally going through some tough family issues and a bad divorce so please give me a little grace if it takes a couple days to hear back from me!

Hang in there!

Shelly



Shelly
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