Medullary Sponge Kidney Disease (MSK) Community
kidney pain - treatment?
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kidney pain - treatment?

I am living in Denmark. I have been diagnosed having MSK. All stones have been removed from my kidneys and I have no longer infections.
But my problem is heavy pain in the kidneyes and my pain specialist has problem to find the right medicine to take care of that? We are not sure if the pain is nerve pain or caused by the MSK.
Has anybody experience in this area?
Mogens
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12 Comments Post a Comment
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691983_tn?1266808432
my pain was due to low vitamin d levels.have you had yours check??
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489228_tn?1291535054
I have a question.  I recently went through a procedure to remove what we thought
was all my stones only to learn that usually with MSK that is impossible since
many of our stones are actually Randall's plaque, which means the inner meat, the collecting tubes are actually calcifying,  Would mind telling me how old you are, and what procedure they used to "remove all your stones"?

Has your doctor told you your KIDNEYS are stone free, or that their are no stones still in the ureters?

There are some other things that an cause pain in our kidneys, like low Vit. D, dehydration, or too high a protein diet.  Even drinking too much at one time can cause back pressure, since the small cyst in out collecting ducts never let the urine drain properly.

I hope you don't mind my questions but your answers will better help me understand the causes for YOUR pain,

Shelly
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168348_tn?1379360675
Hello and Welcome all the way from Denmark!  I, too, have MSK but am doing ok right now with it and apparenlty "free of stones" .. I don't believe we are ever "stone free" but "free of stones that show up on tests" .

I know another MedHelp member who lives in Denmark, too!  How nice to have you on our community ....

I'm sure many can offer you some great advice here .. C~
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Avatar_m_tn
Thank you very much for your comments and question.
I am 73 years old. It is correct that I am stonefree - taken through the penis and the ureters, but I have not mentioned that I have calcifications (very small) left back in both kidneys.
I will check my Vitamin D level again.
You write "drinking too much at  o n e  time can cause back pressure". I am told to drink 2,5 - 3,0 lt/day - I never drink at lot at  o n e  time, but during the day a lot totally.
During the night (once) and first thing in the morning I have to press to be able to urinate -during the day normal.
I am treated by the best kidneystone-specialist, but the knowledge about MSK pain
- at least in this country - is minimal.
Therefore I am thankfull for every input about MSK-pain.
Mogens
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592774_tn?1325397342
Many of us have pain even when no stone.  My pain ended up being from an infection that did not show up with urine cultures. I had pain for over a year, barely able to do anything other than lie around. I actually was taking narcotic pain medicine almost daily. I was given Bactrim antibiotic for bronchitis last December. Within 2 days I was pain free in my kidneys. I have been on Bactrim since then and I am doing great. I am in pain free the majority of the time now. I can't even remember when I last had to take pain medicine!
Perhaps your doc. would consider a trial of long term antibiotic to see if helps with your pain and urinary hesitancy during the night and in the am.
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489228_tn?1291535054
The pain in your kidneys most likley is directly connected to the small calcifications in your kidneys.  As Nancy mentioned many of us do become painfree with antibiotics,
I and my doctor believe that a biofilm infection has actually set up with in those calcifications.  I have written a paper on this, along with a short paper on MSK pain and treatments.  I think both are on the Health pages on this site.  If not you can't find it here, go to our IC support site.  www.moarkic.com and click on the menu item MSK, then MSK info for this article.  (MOARK is because we are a support group for IC patients also in MIssouri and Arkansas.).

Dr. Wolf also developed a procedure to help release the pressure of the many calcifications in the collecting ducts of the kidneys as well.  I went to him at the University of Michigan for this procedure. The main text of his article is also in the Health pages of this site, but if you need the pdf for your doctor, send me a private message, with your e-mail address and PLEASE remind me who you are and what you need.  I am very active in trying to help patients so things sometimes begin to blur....

There are others who have found great success with Vit D.  You will find a lot of info
on this here too.  Most of us who were checked were quite low, and this can contribute to the pain levels also.

The bottom line is this, YOU ARE NOT ALONE, I HAVE LOST COUNT OF THE MSKERS I HAVE TALKED TO WITH CHRONIC PAIN EVEN IF THERE IS NO STONE IN THE URETER ONLY IN THE KIDNEY.  There are several treatment options
listed on the Health page on this site as well!

Hope this helps, let me know if you need more info!

Shelly
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Avatar_m_tn
Thank your for your comments and information, very helpful.
I will appreciate very much if you will send the pdf, of dr. Wolfs article about "to help to release the pressure of the many calcifications in the collectingdutcts of the kidneys as well".
My E-mail address: ***@****
Kind regards
Mogens
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Avatar_m_tn
Thank you for your comments.
You mentioned the antibiotic BACTRIM. I take it as a brand name. I will appreciate very much, if you will send me the generic name.

Kind regards

Mogens
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Avatar_m_tn
Thank you for your comments
What type of narcotic pain medicine was it? - and did it help?

Your "story" about bactrim is interesting and I will inform my urologist. Thank you.

Kind regards Mogens
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Avatar_m_tn
Thank you.
Are there any possibiliy for me to contact the another MedHelp member living in Denmark?
Kind regards
Mogens
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Avatar_m_tn
Vitamin D,
I have now started on Vitamin D, 4000 iu/day for 3 month.
I take Vit D3 - is that the right one?

Kind regards
Mogens
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489228_tn?1291535054
honestly the levels of Vit D (and yes Vit D3 is fine.) very between doctors.

I do believe there are some links to info on the Vit D in the Health pages if not
you can e-mail me directly and I can send you some.

MY GP started me on a very low dose, I think and not enough, my favorite pharmacist
gave me links and info, recommending much more.???  BY THE WAY THIS
PHARMACIST ALSO TOLD ME THAT THEY HAVE FOUND BY TAKING A FISH OIL SUPPLEMENT, OMEGA 3 ALONG WITH YOUR VIT D, AT THE SAME TIME, OR EVEN EATING FISH THIS CAN INCREASE YOUR BODIES ABILITY TO ABSORB IT!

This is the problems, after contacting several MSK researchers.  Vit D levels NEED to be treated if they are low because the cause many problems including we think increase infection and pain but we know bone density loss.  BUT WITH MSK IF THEY
RAISE THE VIT D LEVELS TO HIGH, THE RESEARCH SHOWS IT CAN ACTUALLY INCREASE STONES.  This is why it is important to work with your doctor not just
start taking a supplement.  It sounds to me like your doctor is following the direction of mine.  I am to take it 3 months they have my levels rechecked.  he will increase it then if need, but he plans to closely monitor my levels.

I hope this helps but like I said feel free to send me a message or e-mail me
if you have any more questions!

Shelly
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