Medullary Sponge Kidney Disease (MSK) Community
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1244856 tn?1294756429

sponge kidney disease cure

Hi i have been having problems with extreme pain in my left kidney and have had numerous cat scans done during the past 4 months.  I have been told that i have medullary sponge kidney disease from my renal doctor and urologist and have had a lithotripsy done about a month ago.  i had a month free of pain and havnt had to take any pain killers (thank god haha)  and had a good birthday during that month, but now everything is back.  Thing is my kidney pain and complications are always combined with epiditimitis.  Has anyone else had any other problems like this.  The doctors in the er are thinking that i am a pain pill junkie and am just looking to score even though i have a medicine cabinet FULL of old pain pills and anything i could take if i want to but i want this to end and stop happening i have changed my diet to mediocre protein and low calcium intake and nothing seems to work.  Am i alone in this or are there other people out there with similar problems or any ideas of how to help me.  the pain feels like a kidney stone usually but the cat scans dont show any in my tracts they just show about 8 little stones unobstructing.  im banging my head and thinking that im going crazy and that its all in my head but the pain gets so bad sometimes that i start throwing up and i have a blood pressure machine that has told me that my pulse rate goes up to 155 (the highest so far) during times of extreme pain.  any help will be appreciated or just knowing that im not alone in this will be also.  thank you email me at ***@**** with any help or comments you might have.  thanks again
Justin Michael McElroy
2 Responses
587521 tn?1238504922

Welcome to the group.  Honestly, I am very surprised that someone has not beat me to this.  Since I am female I do not share the epiditimitis portion of you symptoms, however the kidney pain is a very common problem with MSKer's.  We have all had to endure the ER docs and their assumption that we are junkies looking for a fix.  I got in the habit of bringing my x-rays with me when I went in.  Just to prove that I did in fact have stones in my kidneys.  Most doctors also believe that it is not possible to feel pain in the kidney.

If you have not already, visit the Health pages for this group and read "A New Procedure for MSK Stones/Calcifications: Lithotripsy Papillary Calcificati..."   This journal talks about a procedure that has helped several of us with intense chronic pain.  I took the article to my urologist, and with its help, was able to convince him that I WAS feeling pain in my kidneys.

Hopefully some of the more active members will respond to you also.  They have so much information and a lot of good (and bad) experiences to share.

Good luck in your search for help and understanding.  You are not alone.

489228 tn?1291531454
Sorry, Becky going through some tough issues, (including my husband filing for divorce), so watch the daily updates but have not had the time in here I used to.

I am so glad that you found us and shared your story with us.  You sadly, as you will find reading through the pages of posts on this site, are not alone. Welcome, {HUGS}, you are among friends!  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.  You can not post links or e-mail addresses on the open forum, they have had some problems with that in the past.

I also have an article on our MOARK IC website on MSK and 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. You are very far from alone,  I can tell you 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!  One things we also see is most patients have MSK and_________.  There many different autoimmune or difficult diseases that can fill in those blanks.  I very good article on the effects of a Biofilm infection in the host can explain this also.

  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:

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!


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