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Medullary Sponge Kidney Disease (MSK) Community
515 Members
1177396 tn?1263793839

Another Newbie

Hi everyone,

I've recently learned that I have MSK along with moderate mitral valve prolapse + tricuspid valve regurgitation (10-15 cc's that leaks). I am 22 years old and all of this came about after my recent delivery of my daughter in November. I've always had UTI's but during labor with my second child I had a severe kidney infection and was induced. I later returned to the ER for complications (palpitations, shortness of breath, edema in my legs, bp was 180/104, etc) that's when they did a abdominal ultrasound and said I had MSK. I've seen a urologist who told me to see a nephrologist about it which I did two days ago but no one has been able to put my mind at ease.

The nephrologist said that we have to do another blood test next month because some things were a little wacky in my blood and urine. I feel very alone and I feel like doctors just brush it off. I just keep fearing that my kidneys are shutting down. I'm also upset because I've been told no more children because of both the kidneys and heart. My urologist speculated that the kidneys were to blame for my bp problems in both my pregnancies (first thought to be because of PIH or Preeclampsia.) I'm not sure if anyone knows what blood test reports mean or how to translate them but here's my stats. In order from the oldest to the most recent the first one being in the being of November and the last being December 26th-

1st) Blood- BUN 10, Creatine 0.8, and BUN/Creatine ratio 13. In my urine- no protein or blood.

2nd) Urine- Occult blood 300, protein 30, leukocyte esterase 75

3rd) Blood- BUN 16, Creatine 0.7, and BUN/Creatine ratio 23. In my urine- no protein or blood, high white blood cells             but no infection.

4th) Blood- BUN 22, Creatine 0.7, and BUN/Creatine ratio 31.9. In my urine- Blood 2+, red blood cells 25-50, high white blood cells.

I just had another urine test done and they're trying to culture it. My cardiologist has stepped up and is the one actually ordering all the tests.

Has anyone had protein/blood/white blood cells in their urine just because they have MSK? And is it bad that my BUN keeps increasing so fast? I wonder if my last pregnancy took a tole on my kidneys. I keep drinking a lot of water my urine is always a hazy yellow color (probably TMI!)

Yesterday I finally cried my eyes out. I've been convincing myself everything is okay but it's no fun being told I not only have one birth defect but two! I am so thankful I found this forum. I was on the preeclampsia.org support forum and it was them who said women who have been told they have preeclampsia often times have underlying problems (kidneys/heart/liver) and to get it looked into. These forums definitely help. I really hope to hear back from someone it means a lot.
7 Responses
489228 tn?1291535054
Welcome!

  You are not alone however each of may have a different combo of illnesses,
most of us, at those of us with Calcifications have other illnesses as well.  Usually
metabolic issues are found too.  Unfortunately most doctors do not really no that much about MSK.  There is little money going for research etc, and  honestly it is not being taught in medical school.  I am not a doctor just another patient like you searching for answers.

Kidneys and heart are very closely related.  Your Creatine rate is actually very good,
the BUN I do not know.  As far as blood, protein and WBC, yes I have had all of those things.  For me they are connected to a chronic infection that it sounds like you may
also have etc.  I have to live on antibiotics.  There are some natural ones you can try first.

I would encourage to read through our healthpages on the top right of this pages.
Esp. the article on Pain when no stone shows etc.  We also have an article on MSK at our IC support network MOARKIC under the menu item MSK.  Feel free to PM me for more info or for me too send research studies to you as well.

Again, I am sorry for all you are going through but glad you became part of our MSK community!  PLEASE keep in touch.

Shelly.
1177396 tn?1263793839
Hi Shelly,

Thank you for welcoming me. I'm on Doxycycline right now because of a bad UTI, they said it was e. coli. I'm getting a second opinion from a different nephrologist on the whole MSK matter so wish me luck because the first one wasn't much help! I want to make sure my kidneys are functioning correctly, etc. How do urologists/nephrologists test kidney function? The protein in the urine didn't start until after my daughter was born.

Do you think pitocin could in any way damage kidneys that are already affected by MSK? Also, what do kidney stones feel like? Several weeks ago I had a horrible jabbing like pain on my left front side that went down to my groin. It was enough to double me over and I couldn't walk because it would sting worse. It came and went that night then came back several days later then stopped entirely. My mother said that with kidney stones you often throw up because it's so painful. I didn't throw up but whatever it was was definitely painful.

Thank you again,
Kimberlee
168348 tn?1379360675
COMMUNITY LEADER
WELCOME to our fabulous community!

C~
MSK with stones
Avatar universal
Hi there and welcome,
Sorry to hear all you are going thru. I have had a few similar experiences as you actually.  I found out I had MSK after the birth of my 3rd child. I do not think Pitocin could damage your kidneys. I have passed alot of stones and to me they feel like a razor or a piece of glass is moving thru me! When the stones move thru the ureters it causes "renal colic"-or spasms of the ureters which can make you have nausea and bad pain.  Hang in there!  
                                      Kim
PS I was also in ER with chest pain recently and my BP was 150/105! They ended up putting me on BP meds...the doc told me I have excess fluid and I am pretty sure this is because of the MSK eventhough they said my BUN and CR. were ok
1261169 tn?1273966531
Ktoves.....man I have had symptoms since my third child cherish was born...off and on again.....it came on as a uti and felt like a stone because I passed one in 1996 and I was familiar with the intense pain on my side....I was traeted for a uti.... and anyway, noone could find a uti after that but, I was always urinating like it was a uti and  I understand your pain when it comes to not being able to have more kids....I did ...six actually.....The docs would always say we can't find anything mam....Everything looks good...then I would get pg.....and put off going to a nephrologist......It took years to even find the calcification in my tublules...a sonogram finally confirmed it......my kidney function is good but, my back hurts all the time and I urinate constantly...plus I am tired but, all in all I am lucky !!!! I get angry sometimes because the docs act like the pain is in my head.  I get bitter about this...like why or what did I do wrong...was it a prescription drug I took that caused this..too many vitamins...an herbal remedy?  what and why?  I have done research and the stuff I read is insane...like too much vitmain A or antifreeze poisoning and wierd stuff like that.....can cause the medularry calcinosis and it scares me.....and then they say it can be renal tubular acidosis or MSK....or hypercalcemia...I finally made my way to a kidney stone specailist at Vanderbilt in Nashville that said MSK was hard to diagnose.......I don't know.......I just know that I must have what Shelly was talking about...a low grade infection..hard to detect but, one that produces symtoms..............
Avatar universal
You are not alone. I too have a mvp w/ regergitation and major BP problems w/both my pregnancies & have been in a living hell for 2 years w/kidney stones & infections of kidneys , bladder & urinary tract & until yesterday never had a proper diagnosis. I diagnosed yesterday with MSK & I have severe pain no doctor has ever seemed to manage. i am doing my own research & Im going to find a doctor educated about MSK because Ive found so many doctors are clueless. AN Er radiologists finally found it on a catscan & no one ever bothered to tell memy diagnosis that Ive been waiting on for so long  until 3 months later! I can't believe our health care system. If MSK patients speak up & have a loud voice about it & learn who to lean on to get research done on this disease then we can all have some relief in one way or another! Ill keep you in my thoughts! DoodleBug 887
1177396 tn?1263793839
Thanks everyone for all your support and your own stories when it comes to MSK. I just found out that I'm 4 weeks pregnant with my 3rd child. I've had 3 UTIs within 4 months and have yet another one right now. I've been having some bad cramping and I fear that a UTI could cause a miscarriage, has anyone ever heard of it happening? I'm calling my OB tomorrow to see how soon I can get in because I'm miserable right now and scared to death. I hope they'll see me even though it's so soon.

Kim, I really do think there is a link too. The doctors were baffled that I didn't have all of the classic Preeclampsia signs. At the time of high BP I had no protein in my urine so they just said it was Pregnancy Induced Hypertension and left it at that. I didn't have protein until after my BP went down, crazy right? I honestly think that MSK can cause BP issues during and right after pregnancy. I don't see how it wouldn't and it explains a lot for me.
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