Medullary Sponge Kidney Disease (MSK) Community
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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Hello

Hello..I am also a new member and just wanted to say hi.  I am 34 and had a stone while I was 7 months pregnant.  I had to wait until after I gave birth to have the stone surgically removed since it was too large and I was unable to pass it on my own.  I was then diagnosed with MSK, and have frequesnt pain.  I go back to see my nephrologist in a month, and I will tell him of the pain, but he already said that nothign can be done to prevent this.  My kidneys are full of stones (not sure which kind).  All he told me to do was to drink lots and wait for teh stones to pass. I was thankful that it was nothing omore serious, but it is still upsetting to know that I will have this pain forever, and continue to apss stones.  Tha nk you Shelly and others who have responded to let me know that I am not the only one.  Please let me know of anything helpful that can be done.  
toomanystones (Kerry)
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Welcome to our MSK Community .. we are so glad you are here with us.  This is a great place to give, get share advice -- almost all of us have MSK or know a friend or loved one who does.

C~
MSK with Calcium Oxalate Stones
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HI and Welcome!!  I am so glad you came over here there is so much good information on this site for us.  Really we work together to network information to help one another.  Doctors, I should rephrase that most doctors do not understand why we have chronic pain even when no stones show in the ureter and no infection shows up with on UA. In the beginning I began to research for answers for my own chronic pain that my doc and I did not understand.  Honestly at first we butted heads, him telling me my kidney DID NOT HURT!, Me telling him, my kidney that is not supposed to hurt is sending me nasty messages..., LOL.  Now I think he is the greatest and he is one of my advocates!

The thing that surprised us for me was the chronic pain went away when he put me on long term antibiotics.  At first he did so because we thought I had chronic cystitis, but my bladder did not respond to them only my kidney.  I have since also been diagnosed with Interstitial cystitis.  It was then a stumbled into learning about biofilm infections and a long amazing story how we began to prove what was happening to me, but for me the pain is cause by a biofilm infection that has set up with all those calcifications in my kidneys.  Now I am an EXTREME, 13+ years ago half way through a stones surgery they realized the operating room had not been cleaned and I was scoped with unsterile instruments.  I got very sick and because of fear we did not know all the details and my infection was not treated properly!  What resulted was that these hospital resistant bacteria built a fortress in my kidneys for many years before I got help!!  BUT this has helped us understand more about this pain in others!!  I even had a high level researcher get involved and write a 3 page report giving credibility to my theory!  I currently have a 13 page report I have been working on for the last 2 years really to finish full of articles to back our pain and to help with treatment options!!  

I have no idea of the number of patients I have talked to just like yourself!!  The first step I would encourage you to take is to go to the Health pages tab on the to[p right corner of this forum, make sure you are signed in.  We have many great resources and article in that section,  Many have contributed to this section making it an awesome resource that should keep you busy for a while.

Then there is also a paper I wrote in 07" for a patients to take to their doctor, that is under the MSK menu item on our website set up
mainly to network IC patients in MO and Ark but I also put my MSK research there along with a link back to this group.  That site is MOARK IC.

Just to give you an overview and not overwhelm you with too much info initially these are steps we have found helpful toward dealing with the pain issues.  Starting with the least invasive first and ending ONLY when all else fails with surgical options.

1.  Like your doctor said, drink lots of water never let your kidney get
empty or dry.

2.  Limit your meat intake, since this is tough on the kidneys many have found cutting this to about 6oz a day helps.

3.  HAVE YOUR VITAMIN D LEVELS CHECKED then try to get it up to about 50!!  All have come back very low except one!  I was shocked at how low my levels were and how much better I feel, am better able to fight off the infection and I have less pain.  It is important to work with your doctor though because too high levels can increase stones too!

4.  Avoid getting overheated or overexerted

5.  Try taking some natural antibiotics.  There is a list of them in 'the health pages.  

    One I have found, Silverbiotics made by Biotech Labs, to be very helpful!  The cheapest place if your in the US to order it is through Vitapal, there is a link on the MOARK WEBSITE to them also.  If you would like some research on this also you can pm me.  However there are other natural antibiotics as well.

6.   If you continue to have pain ask your doctor about trying a long term antibiotics.  This alone helps many!  I have had to live on 2 full strength antibiotics for over 2 years... REMEMBER I AM THE EXTREME, however last year I was on IV's basically peeing blood.  this year with help, I am able to use the orals natural and prescription.

7.  There is a procedure written about by Dr. Stuart Wolf, though more then we realized actually do this procedure.  He however did a research study on MSK patients with the unexplained pain and using this procedure. He had very good results with it.  I had this done last year and that along with a hard dose of the IV's and raising my D levels has given me some of my life back.  I have gone from being double over on the couch to be able to be a part of my kids life!

    Again, I do not recommend surgery ever as a first step.  We know that the more you mess with the kidneys the more problems you can have BUT, when you to the point the pain meds do not even touch the pain or like I was peeing blood daily, living on IV's and had no quality of life it was time to do something.  If none of the other things work, then this procedure is worth discussing with your doctor and considering.

  If you need, I would be glad to send you some pdf articles for your doctor as well.

Hang in there! (hugs)  I am so glad I saw your post and you joined us!

Keep in touch and let me know how you are doing!!

Shelly
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