Medullary Sponge Kidney Disease (MSK) Community
Msk Pain NOOne Will Help
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Msk Pain NOOne Will Help

I need info on the surgerys that have helped msk pain. Im desprate and have no options. All the Drs I have seen say that there is no pain so I should just suck it up but i hurt so bad and always have an infections and they can see little stones. Im 32 have 4 kids do calander modeling and I cant get out of bed most days due to the pain. Please help with any info you have. Thank You .
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Some members may be able to give you their experiences .... WELCOME to our
MSK Community.  You are in the right spot for support .. we are here for you.

C~
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I am so sorry I did not get in here to post to you sooner.  We have been going through some tough personal family time so have been off line.

If you go the the health pages in the top right corner of this page you will find
many articles and info on treating the pain issues.  You are not alone and your pain is very real.  I will try to send you a message also. Here is a start:

Health page on pain:
http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185


Shelly
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Ask your doctor for Tramadol....works great for me
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Hi,

Hope you are feeling a little better, I have pain, as do most of the msker's here, my GP gives me Dihydrocodiene 60mg slow release...it does the trick for me...hope you can get somewhere soon.

Take care,
love Sam x
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Hello, I am a 29 yr old female who has chronic right flank pain and it is to the point it is unbearable. I was diagnosed with msk once i gave birth to my daughter 2 yrs ago. Once they found it they said there is no way the pain was coming from the kidney and said it was OB/GYN issue so was pushed off to OB/GYN and i had right fallopian tube and ovary removed and the pain is still there. The urologist i saw said there is no way that i could feel pain in the kidney from the MSK. Well need i say they found 16 stones from 1cm to 3cm in my right kidney. I feel like i am going crazy. I need words of advice please.
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Sadly, if you read through the many post here you find that this chronic pain is the heart of many of the discussion here.  Again, if you go to the healthpages listed above I have a list of treatment options and sets for the chronic pain issues.  I just did one yesterday also step by step what we are learning about the chronic pain levels.

1,  Your not alone this is something many of us are struggling with
and the pain levels daily get debilitating at times.  My doctor and i believe that one reason for that is that a biofilm infection sets up
with in the calcificiations.  There is info on that also in the health pages as well as going to the support website we have for IC,
www.moarkic.com and clicking on the menu item for MSK as well.

2.  Once you have read those articles pm and I can send you some articles on MSK and biofilm infections as well Dr. Wolf's procedure that he is uses to help treat the MSK pain.  The key here is that whether you have this procedure or not, the article clearly shows that MSKers suffer from pain even when there is no stone in the ureter and not infection shows on standard UA's.

This procedure I do believe is a last resort however offers a treatment option for those who do not respond to anything else.  The first step is to get you Vit D levels checked, stay hydrated and limit you meat in take.  I personally am amazed at how raising just my Vit D levels helps me significantly with functioning daily.

Feel free to send me an e-mail address for those articles, now that I am back home and on my computer!!

Shelly
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