Medullary Sponge Kidney Disease (MSK) Community
A Ton Of Questions About MSK
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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A Ton Of Questions About MSK

Hello, all,

I was diagnosed with MSK about nine months ago.  I've spent the past months trying to learn more about it, and also learn how to manage it better.  I have chronic pain in my right flank which can range from simply annoying to reducing me to a sobbing puddle, although it usually doesn't get that bad too often.  I would love to hear what you guys have come up with.  Specifically:

Traditional pain meds that have helped (I've been on a slew already; right now I'm alternating between Vicoden and Tramadol, but I can't take either of them while I'm at work, or driving so I just have to suck it up all day)

Herbal or homeopathic meds/treatments you have found helpful.  Is there anything I should be taking that would help support my kidneys?

Has anyone tried acupuncture for this?

I'm reading about Dr. Wolf's procedure, but I'm not sure what it is.  Can anyone point me in the right direction for this?
Would doing some kind of "cleanse" be helpful?  Has anyone done one that they would recommend?  I'm borderline hypoglycemic, so  I don't think I could tolerate a strict juice fast.

I just saw my nephrologist for my six-month check up (which I was three months late for, oops) and he says my kidneys are functioning quite well, and there's nothing he needs to treat.  He says just manage the symptoms and try not to let it stress me out too much... which I understand, but it's hard not to get stressed about something that causes LOTS of pain EVERY DAY, and for which there is no cure.

I do not have any stones that I know of, and have not had any ever (again, that I know of).

I've had three yeast infections in the past year, one of which turned into thrush too.  Has anyone else had this problem also?  Nephro didn't think there was any connection.  I wonder if my body is just distracted by dealing with the MSK and isn't paying enough attention to the flora and fauna.

I started taking Moxxor, a very expensive brand of omega oils at the beginning of the year.  It made a BIG difference in my level of daily pain.  I still have lots of pain, but at least now I can think that I may be able to live the rest of my life with it, where I had serious doubts about it before.  There have been several times when I ran out, switched to another, cheaper, brand, or otherwise stopped taking it for a few days and every single time my pain level went back up.  The doctors seem pretty skeptical about it, but they admit it won't hurt me at least.  I now take another brand of cheap omega oils in addition, and this seems to help a tiny bit more.  Any idea why this would work?

Sometimes just the thought of meat makes me feel sick to my stomach, and I am in no ways a vegetarian.  Cheeseburgers are mother's milk to me :)  Has anyone tried going totally vegetarian, and has it helped?  I love meat, but I'm willing to try almost anything if it will help.

I see a pain specialist once a month, and he's tried me on a number of different pain meds.  Some of them have been more helpful than others, but it seems like I often have to take so much that it makes me really sick to my stomach; sometimes laying by the toilet for hours in a cold sweat... and sometimes the pain is still there even then.  Not to mention the fact that I can't get in a car at all on them.  My entire life revolves around when I can get home, and stay there, so I can take some meds and finally get some relief.  I feel like I'm missing out on so much of my life, and I don't want to have to live this way forever.  I'm 27... I should be out partying and having fun :)  Well, ok, I'm not a partyer, but I do miss out on a lot of family stuff, dinner with friends, etc, because I just can't leave the house.  I feel like people get really sick of hearing about my kidney again, and I often get a cold shoulder from people at work who seem to think I'm using it as an excuse.

Speaking of which, has anyone found a good answer for why it hurts all the time when I don't have any evidence of stones, and never have?  And why some people get pain with it and some don't?

Ok... I think this is enough for now.  Thanks for letting me ask all my questions and letting me vent a bit.  It's really good to find other people who have it too; it makes me feel less alone.  And maybe we can all help each other too :)  Thanks!
Tags: Pain, treatment, stress, chronic, help, MSK
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168348_tn?1379360675
Hello .. so glad you've come back to our community with some excellent questions!  I do know that my Uro swears by certain brands only on some of the hollistic meds so I do believe and hear what you are saying on the fish oils!

Here's a great article about why it hurts yet no stones!  It's in our health pages.

http://www.medhelp.org/health_pages/Urology/Why-Does-it-Hurt-so-Much--yet-No-Stone/show/383?cid=185

Have they checked your Vit D levels --- we've found out that on this community alone many (if not most) of us have very low Vit D levels and when we are treated for it our pain has gotten a bit better.   May be worthwhile to ask about that.

I have history of documented stones .................activity comes and goes.  With me stress and/or trauma (like suregery, etc.) to the body is a huge factor.  I get repeated UTI's as many of us do and we show negative to cultures until they get really bad.

C~
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489228_tn?1291535054
I WOULD ENCOURAGE YOU TO GET A COPY OF YOUR TEST RESULTS.
HOW WERE YOU DIAGNOSED WITH MSK?

OK YOU SAY NO STONES, DO YOU MEAN NO CALCIFICATIONS IN THE
KIDNEYS OR NO STONES IN THE URETERS?

DR. WOLF'S PROCEDURE IS MAINLY FOR THOSE OF US WITH CALCIFICATIONS
BELIEVED TO BE CONNECTED TO THE STONE BURDEN WITHIN THE COLLECTING DUCTS OF THE KIDNEYS.  THESE CALCIFICATION PATTERNS ARE TYPICAL OF MSK...ESP. MID LIFE.

IT IS POSSIBLE TO GET A CHRONIC INFECTION WITHIN THE KIDNEYS WITHOUT
THE CALCIFICATIONS, HOWEVER IT SHOULD RESPOND BETTER TO ANTIBIOTICS THEN THOSE OF US WITH A LOT OF STONES.

HAVE THEY TRIED ANY ANTIBIOTICS FOR YOUR PAIN?

HOW DID THE PAIN RESPOND?

HERE IS THE LINK TO ANOTHER GOOD ARTICLE ON MSK AND THE PAIN. ACTUALLY THE HEALTH PAGES HERE ARE FULL OF GOOD INFO.
http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185

THE ONLY THING I CAN REALLY ADD HERE IS THAT YOUR NOT ALONE IN YOUR PAIN LEVELS.  KEEPING HYDRATED AND AVOIDING LARGE AMOUNTS OF MEAT IS A GOOD PLACE TO START.

CLEANSING WAS NOT A GOOD THING FOR ME...

HOWEVER HAVING YOUR VIT D CHECKED IS A REALLY GOOD IDEA MOST OF US CAME BACK VERY LOW.,, I AM NOT JUST BELOW NORMAL AND IT HAS SEEMED TO HELP ME SOME THOUGH FOR ME NOT A TOTAL CURE.  FOR OTHERS IT SEEMS TO BE THE ISSUE OF THEIR PAIN.

SHELLY
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168348_tn?1379360675
My Vit D was 9 when normal was 32-100 .. after 8 weeks of high dose Vit D it now is maintained at 33.  

C~
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Avatar_f_tn
I haven't heard anyone say I have calcification of my kidneys, but I also don't have any stones in my urethra.  I'll have to ask my nephrologist about the calcification.

No one has tried antibiotics for my pain.  I've had to be on ABS a few times recently for various things though; I didn't notice any drop-off my pain, but does it require a specific kind of AB?

Thanks for the idea to check my vit D.  I had bloodwork done recently, which didn't show anything remarkable at all, but I'll ask my doctor to check it for me.
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489228_tn?1291535054
We have all had to ask to have our Vit D checked it is not done on a standard blood test.

It can take some time for antibiotics to work however if you were on them for at least 2 weeks and saw no improvement then either the bacteria are resistant to that antibiotic
or your issue is something else.

Again, hydration, limiting your meat intake and having your Vit D tested should
be the first line of treatment for the chronic pain.  If those do not help then trying
long term antibiotics or even the natural Silverbiotics can get the pain under control,

Dr. Wolf's procedure is done for those of us who no longer responded to other treatments.  

Do check to see if you have calcifications in the kidneys, (these are sometimes called Randall's plaque.)  I find it helpful to get the radiologists reports since often doctors either assume that we know or assume you don't need to know.

Hope you find answer and get your pain under control soon!
Shelly
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