MEDULLARY SPONGE KIDNEY DISEASE (MSK) COMMUNITY
WILL THE PAIN EVER STOP

WILL THE PAIN EVER STOP

I HAVE BEEN DIAGNOSED WITH MSK SENCE 2001 I WAS TOLD THAT MY RIGHT KIDNEY IS FULL OF STONES AND SEVERAL IN MY LEFT KIDNEY. IT HAS GOT TO THE POINT THAT I AM ALWAYS IN PAIN. I HAVE PASSED UP TO 14 STONES IN A 3 WEEK PERIOD.IM AM SO TIRED OF THIS WILL IT EVER STOP. MY DOCTOR TELLS ME THIS IS SOMETHING THAT IM GONNA HAVE TO LIVE WITH.IT WAS SO BAD LAST WEEK THAT I COULD NOT EVEN BEND TO DRESS MTSELF.I HAVE ALWAYS BEEN VERY ACTIVE IN MY CHURCH AND HOMESCHOOLING MY KIDS NOW IT SEEMS THAT I CANT DO ANYTHING FOR THE PAIN.
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489228_tn?1291535054
You are not alone and many of us live with all this pain etc.  I do not have time to really rewrite all of this to you so I am to copy this post etc. I hope this helps you,
too and Welcome so glad you joined up:
Reposted


Welcome!!  You have found the right place, you are among friends
here and also others who like you struggle with MSK!  Together we are also seeking and have found some solutions for dealing with the kidney pain and MSK!  

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.  The one that was in the normal range though I now know was a low normal.  To my amazement research has been coming back to me that low Vit D has now also been associated with Interstitial Cystitis, pelvic pain in general Prostatitis, Fibromyalgia etc.  I personally had to ask my physicians to check my levels, I came back a 14 normal is 30-80, though they put me on a supplement, I went up to a 27, recently I began feeling bad again and it went back down to a 22.  The total explanation is a little complex, however they are finding that Vit D, is more important then they realized, effects muscles, mucus linings, as well as helps us fight off infection and help relieve pain.

So bottom line step one is to ask them to check your Vit D levels,
I believe it is called the Vit D 25OH

There 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

There is a lot of good info in the health pages as well, here is the link f for all them:

http://www.medhelp.org/posts/show/565929

I am also an IC support group leader, we have a menu item on our site for MSK as well.  http://www.moarkic.com/

For the link to a specific article that I wrote on MSK and Bofilm infections in 07'.  I am working on and have been for sometime a more in depth article with the many new ideas and research but for now this is what we have:

http://moarkic.com/content/view/68/56/

Below are some of my favorite MSK articles they should also be in our health pages, but just for reference they are here:

http://www.emedicine.com/radio/topic433.htm

http://emedicine.medscape.com/article/242886-followup

AFTER YOU LOOK TROUGH ALL THE INFO AND EVEN OLD POST FEEL FREE TO SEND ME AN E-MAIL ADDRESS AND I WILL SEND YOU THE ARTICLE ON DR. WOLF'S PROCEDURE AND ACKNOWLEDGMENT OF OUR UNRECOGNIZED PAIN WITH MSK.

Again welcome and I hope this helps you!

Shelly

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