Medullary Sponge Kidney Disease (MSK) Community
Protein and MSK
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Protein and MSK

I am currently 34 weeks pregnant and at about 20 weeks my ob found high levels of protein in my urine. They thought it was the early stages of preeclampsia and sent me to a high risk ob. I have no other symptoms of preeclampsia and have the general doctor community stumped. At my last ultra sound, the high risk ob had them do an ultra sound of my kidneys and found out that my left kidney is extremely enlarged. They now think that it is NOT preeclampsia but MSK. I have been trying to understand more about MSK, but have been left with very vague diagnostics as well as symptoms. The only thing I know for a fact is that my protein levels are 40x higher than they should be (based on my last 24 hr sample) and my left kidney is almost double in size. I have never even heard of MSK before. Is high protein a typical symptom of MSK. I do not see my nefrologist for two more weeks and would really like some answers. With the new findings, my general ob told me that I will no longer be able to carry to term and they will induce me at 39 weeks (latest) if I haven't already delivered. Is MSK really that detrimental? Reading up on the posts leave me more confused than before. Some say it is more serious than others. Is this a relatively unresearched disorder? Also, I have read that many of you have stones to accompany this. I have never had a stone in my life and have no signs of having one now.

I guess that is why I am so confused. No stones and high protein. This seems contradictory to what many of your symptoms are.
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592774_tn?1325397342
I am sorry, I can't help you with the protein question. I wonder what they saw on the ultrasound that would indicate MSK.

I am so sorry you are going through this. I know it is going to be hard to wait those two weeks to see the nephrologist.The good thing is you have 24 hour urine results to bring with you to the nephrologist. That would probably be the first thing they ordered. You will not have to wait even longer for those results.

MSK did not effect my pregnancy outcomes. I did have a kidney infection 2 weeks prior to my due date with my first, but she was fine. My others were early for other reasons than MSK. 2nd was induced at 37 weeks.The docs did an amnio  first to check her surfactant levels to make sure she would have not problem breathing.  3rd was scheduled C-section at 39 weeks. Having them a couple weeks early did not effect them at all.

Hopefully someone else will have experience with high protein to share with you.
Nancy
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168348_tn?1379360675
I had a very bad staph UTI that went undiagnosed and cause pre-term labor but they didn't figure out the MSK until 8 yrs later.  Not sure how they figured it out by ultrasound?  Maybe ask for a copy of the radiology report to have with you for your next appt and keep calling for cancelations for an earlier appt to ease your mind.  

I had 4 children and for me the MSK did not interfere  other than UTI w/o presenting as positive .. I had gallstones which for me were horrendous and today my kids are ages 10-18 :)

WELCOME!

C~
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489228_tn?1291535054
I hope I can help you some..., on all my test now my right kidney is enlarged
some compared to my left.  I was told this actually was caused by my pregnancies
but not caught.  I was told the baby itself can cause obstruction, if it is large and lays on the ureter/bladder somehow.

OK, now stones,,,are you sure you have none inside the kidney itself?  How old are you?

I had my first stones at 19, another at 24 but was 31 before my kidneys were full of the small calcifications.

OK now Protein, I did show protein in my last pregnancy and and do now often. This can be associated with MSK, it can also be a sign of infection, however sometimes in pregnancy it can come from not eating enough complete proteins... I only know this because we had the last two at home and I read a lot of midwifery books etc.  OK I will try to explain this simply, many of us find that a lot of protein increases our pain.  In the MSK kidney the collecting ducts have very small cysts that do not allow the urine in our kidneys to drain properly.  Protein esp in the form of meat is hard for you kidneys to digest as well.  Many of us, me included try to limit our meat intake to no more the 6oz a day.  Drinking plenty of fluids throughout the day and night is essential too.

Now an incomplete protein is like meat, (and I love meat oK),  This is because your
body doesn't break it down quickly and easily more of the protein is dumped in your urine etc. then should be.  The best thing to do is eat beans with brown rice, whole grains etc. along with the smaller amount of meat.  Some how these balance each other out, and your body is more able to utilize the protein!

I am not a doctor so can only tell you what I read and learned from personal experience,  MSK really effects each of us differently for some of us, it is very disabling and for others it is the benign disease the medical papers like to write about...

  There are some really good health pages on MSK on this site too, look in the left top
corner.  You can also go to our website.  It was set up more as a support network for IC patients in Missouri and Arkansas, but there is a menu item for MSK as well.
I hope that helps but please feel freed to answer that I can and I catch!

Shelly
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489228_tn?1291535054
Whoops I left off our site as well,
it is www.moarkic.com/
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Avatar_f_tn
Thanks for helping out with the protein questions. I like to think I am not eating that much meat anymore, but I am sure that is not the case. We are a typical red meat and potato family. I am keeping my meat portions down significantly, especially since they found the high protein levels, but I don't think it is as low as 6 oz. I guess if the kidney isn't functioning properly even the slightest amount of protein can be difficult to process.

As for the stones, my husband has just started getting them. Last May he ended up in the ER due to the pain. I am 29 years old and I have never experienced anything like he describes and don't think I ever have. If it wasn't for being pregnant and being tested for high protein at each ob visit, I don't think this would have ever been detected.

I am glad you took the time to help me out while I wait for my next doc appt. Hopefully I will have a better understanding of what to expect before I walk through his doors.

~A~
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489228_tn?1291535054
Can you or do you mind sharing with me how they discovered your MSK and what
test they did to diagnose you?


I understand, I have had the huge knock you over on the floor kidney stones that your husband has had, however for many of us, with MSK we form a different kind of stone or calcifications, actually called Randal's Plaque.  These are so very small or even attached to and in the collecting ducts themselves.  I describe lit like the ring of Lyme in the toilet if you don't keep it brushed out. LOL

You may or may not have these stones yet, but by 40ish they are classic of MSK.

In this case esp. while you are still young you may pass this tiny stuff and not know it, I used to think I was ovulating.  However often the stone, are deep within the kidney so many of them never make the painful track out BUT YOU CAN STILL HAVE PAIN WITH THE STONES IN YOUR KIDNEY ONLY.  Doctor's do not all acknowledge this
but we have plenty of articles to prove it, as well as a massive amount of MSK patients I have personally talked to all with the same symptoms.  These are not
weird O's or whiners etc either....,many are professionals all are learn to tough it out people that live with debilitating pain.  There is a list of treatments we have found to help any pain issues on the health pages on the right top corner of this site!

I hope this helps you some!
I also can sympathize with you on the meat, but honestly try it you might
find this help your protein issues a lot!

Shelly
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Avatar_f_tn
Well, I am not really sure how they came to the decision that I have MSK, but it seems that my general OB, my specialists, and the radiologist all seem to agree that I do. I have had an ultrasound of both kidneys, more blood tests than I can count, and two 24 hour urine analysis'. They are waiting to do a biopsy until the baby is born since the renal area tends to bleed more than they recommend on a pregnant woman.

Like I mentioned, besides all the doctors telling me I have MSK, I wouldn't even know I had it. Also, reading the most common symptoms makes me wonder even more if I was diagnosed correctly.

I think I was open to the fact that they think I have MSK because before then, they were stumped. Their possible diagnosis and tests all proved false. They were starting to lean more and more towards a very serious kidney malfunction. So, just the simple fact that they think I have MSK was a relief. I can finally start doing some research. BUT....the research leaves me with more questions than answers. The only other thing they think it might be is Lupus. Which, from what I understand, is far worse than MSK.

Hopefully my nephrologist will be able to give me some more solid answers. And tell me if we are back at square one, or continuing on with the MSK diagnosis.

I appreciate your willingness to help me out and understand this better.

Like my kidney, I am a sponge! :)  Trying to take up as much information as possible so I can ask the appropriate questions when I do see the nephrologist.

~A~
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489228_tn?1291535054
I understand, the reason i ask is the even with stones it diagnosing MSK was missed for me.  I understand that the gold standard for diagnosing MSK is an IVP which I could not see them doing during  pregnancy.  I have heard of another whom the doctor's have diagnosed her daughter without stones and with a sonogram, it is just I had never heard of this before!  I had a sonogram of my kidneys  in pregnancy 19 years ago but it was not found however all test are more detailed now and radiologist more educated on uncommon diseases. The other thing to understand is smaller stones inside the kidney may or may not show up on a sonogram... in truth they did a sonogram and KUB while I was pregnant and never saw the stones.  I knew I had one and remember passing a bunch of blood and junk, and the pass passed too.
So they assumed I passed it.  Too much of the ureter could not be see because of the baby.

Hopefully the fullness and pain are related to the position of the baby and by finding this now they can prevent you getting the stone patterns we have.  If you suffer with a lot of bladder pain issues I would recommend you taking D-Mannose and lots of water to prevent infections.  If bladder pain is not an issue then cranberry itself is an excellent tool to help prevent them  The key here is not letting the infections get a hold .
Also watch the proteins as well as the sodium intake, and just sip water day and night.  BY the way the sponge kidney is not that are kidneys are sponge like but the
appears of the kidney with an IVP leaves the dye remaining in all the collecting ducts, this is what gives the sponge kidney appearance.

Keep us posted on your results, and lets hope if there is something in the ureter it passes quickly as well!

Shelly
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Avatar_f_tn
I went through four pregnancies without any complications. A little protein at the end of my last pregnancy but nothing alarming. I did have preeclampsia with my first, but I was also 21, so I've assumed that that was the issue. I think the disease progresses with age for some. I had all four of my girls by the age of 31, and I have had a lot of issues since. I think you are correct in assuming that there is not a lot of research on this disease because it is generally considered benign, but it has a vast array of symptoms.  The symptoms that they think may be lupus could be related to the kidneys. I think most of us have times when we feel lousy for no apparent reason.

Good luck with everything and try and keep your stress low for the baby.

Jodi
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489228_tn?1291535054
Jodi,
   I would encourage you to look through the health pages here, we have found
all the good research articles out there.  I am currently trying to finish a research paper
on MSK and chronic illness that we hope will open eyes as well as doors to treatment
for MSK.  I am also very hopeful that some amazing doors are beginning to open
as well so MAYBE we can get the attention we need to brought to this illness!

Hope to me is huge!

Shelly
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Avatar_f_tn
Thanks for your input. I have looked through most of the information on this site an other sites.  You have done an amazing job of finding what is out there, but compared to other diseases, there is not a lot of info. If you do a general search for MSK, the information usually reads as a benign condition.  There is not a definitive answer on its cause, though it is generally considered congenital. The best solution that doctors seem to have is to drink a lot of water, but when you drink too much to fast, you feel terrible. It's not the disease itself that is the problem, but the side effects from it. They most likely are not going to kill you, just make you miserable. It is not a disorder that mandates a lot of research because it affects a small percentage of the population(of which a small percentage has complications), it's not curable, and has low morbidity.  Anyway, off to the Nephrologist today.  Hopefully I will remember to ask all the questions I have and hopefully all the blood tests are okay. If I learn anything new I will keep you posted.

Jodi
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489228_tn?1291535054
Jodi,

   There is a list of possible treatments on the Healthpages for the Chronic pain etc.
You can also go on our website www.moarkic.com and go to the menu item
MSK.  This may help you as well esp. under MSK info,  Keep me posted on your appointment etc.!!

Shelly

PS  Falling a sleep again at the computer grrr,,  been putting polka dots on bubble bottles till I am seeing spots, LOL
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