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MSK (Medullary Sponge Kidney Disease) User Group
??? For anyone with MSK
About This Group:

This patient Support Group is for discussions relating to MSK (Medullary Sponge Kidney Disease). If you or somebody you know suffers from MSK, you've come to the right place to give, get, & share advice about this oftentimes painful, uncommon disease. WELCOME to our GROUP ~ We're Here to Help!

Founded by ChitChatNine on September 22, 2009
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??? For anyone with MSK

Hello all, I am new to this group.  I was diagnosed with MSK bilateral with nephrocalcinosis multiple groups of stones in 07 but was only an incidental finding was having knee pain so they did a back x-ray found stones had an IVP showed Medullary Sponge Kidney..I have hardly ever had urinary infections although once I had to be catherized to pee..had not urinated in 20 plus hours..The ER doc said it was probably a stone blocking the urethra but I never saw it.  I do have dark urine for I am not a heavy drinker of any liquids.  Sometimes my urine has sand like rocks and burns when I pee. All this is from the MSK?
My question for all is Monday night both my kidneys started burning..painful and would have sharp pains with each heartbeat..by tuesday evening my left back and side where in a constant spasm and sharp pains off the pain scale..(Pain similiar to childbirth which I did without any drugs) and when I went to the ER they did a CT and saw that I had the stones but none were in the ureters.  So what caused this horrible episode??  My husband seems to think it was my visit to the chiropractor who did a vibrating massage down my back.  Would this cause so much pain??  
Thanks
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489228_tn?1291535054
I am sorry.  I am afraid I have missed this board for some time since we have two MSK forums her one medhelp.  This is the more active one and the one I get or am supposed to daily updates on....
http://www.medhelp.org/forums/Medullary-Sponge-Kidney-Disease-MSK-/show/256

Please go to this site and read all the posts and in the healthpages.  You are not alone and I have spent the last 6 years on researching MSK and unexplained pain or renal colic-when there is no stone in the ureter or UTI shows on standard test.  I am contacted by between 1and 4 new MSK patients each week with the same symptoms!  I have lost count of the number I have talked to but it is 100's.  Here is a repost of a message on this discussion:
HI,  First of all let me say I am glad you found us here on MSK and I hope from the message board you have learned that you are

not alone and that your pain is real and there are reasons for you pain.  If possible and you live in the US, it makes it easier to

explain if we can actually talk via phone.  I have unlimited long distance and will be glad to call you, if you give me your number.

In the meantime you can e-mail directly at ***@**** .  I also help patients with IC support etc. and if you go to the menu

item for MSK, you will find an article I wrote on MSK and Biofilm infections. This will help you understand too.  

Also, on the Medhelp message board, 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

that we have found helpeful and the safest steps for the doctors as well.  That said, though many docs are listening, willing to read the many medical reseeseaarch articles etc.  and at least willing  to do whatever they can to help their patietns, unfortunately there still quite a few that refuse.  So

If doctor is not one that willing to try to help you, keep lookng!

Hang in there and keep me posted.

Please feel free to contact me if you have any questions!  I will aslo try to e-mail you these articles as well.

Shelly
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