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

MSK

Hello everyone!! Im a new  member, there is a little relief knowing your not a lone.  Is any one eles on this post from Canada?

I was told I had MSK by just doing a routine ultrasound,  followed by a CT scan.  I was told I have many mm stones in both Kidneys...yeah.  I have yet to see a urlogist, my first appt is Oct.  A six month wait.  I have past 1 stone in April and headed to my dr. just last week in which they believe was another stone, on my right side, then again on Sun that just past, for pain on my left side saying it was likely another stone..Still in pain on the right side.  What eles causes pain if you are not passing a Stone.  The pain does come and go, a little worse sometimes after eatting.

I'm 32 years old a mother of 3 children ages 8,6,3 and run a home day care, so Im very busy, any suggestion what to  mention to the urlogist before I meet him, or any home remedies would be helpful..

Pain also seem to be under my rib cage, any conections with MSK\

Thanks for all the help

Makao
6 Responses
Avatar universal
Welcome!  You know I haven't passed a stone however I have calcifications on both kidneys and my cortices are thinner than a regular kidney.  I too suffer from pain in my right side specially the back side and under rib.  People here are great and very helpful.  
~Brenda~
168348 tn?1379360675
COMMUNITY LEADER
I suffer from under the rib with gallstones, too, but I assume you are gallbladder stone-free with the ultrasound and the CT Scan.

WELCOME to our community.  There's a great article in the health pages about pain w/o stones.  Mine comes in waves .... months fine and months passing stones.  Others are constantly in pain, etc.

Are your's calcium oxalate?  Make sure they analyze them in case there's anything you can do to help prevent them.

C~
Avatar universal
Thanks so much for writting back so quickly!! This is a great board.

I have yet to see a stone pass, so I have no idea what type.  
How long could it take to pass a stone?  I have had a dull pain on my right side for over a week, not enough to med myself all week, but enough too know something is not right.

Thank you all for the support!! Its much easier talking to people who are going through the same things..

Makao
168348 tn?1379360675
COMMUNITY LEADER
Hi,

It can take quite some time (for me upwards of 2 weeks) and sometimes I get a UTI aterwards.  And, mine are small stones -- 1.0 - 4.0mm!

Keep us posted.

C~
Avatar universal
What may be causing your pain is when the stones move around in the kidneys. You need 24 hour urines and a proper CT or IVP w/ contrast. An US can indeed reflecy MSK but it is not the proper method.
If you pass any stones even gravel save it, it must be analyized. My pain is under the rib cage but in the back... rareky in the front. It can go to the groin and down the legs.
                                                   Best... Cara
489228 tn?1291535054
Sorry I have been our of town.  We have actually found that the pain is link to
several issues, inflammation in the kidney and stones moving around can irritate
the kidneys.

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 if you need it,  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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