Discussions By Condition: Kidney conditions

Medullary Sponge Kidney

Posted In: Kidney conditions 6 Replies
  • Posted By: Anonymous
  • May 3, 2007
  • 04:50 PM

I am trying to find someone else who has this condition or even a medical professional who has information about it. I was diagnosed with Medullary Sponge Kidney a few years ago when I was having extreme back pain. The doctor sent me for a CT and an MRI. The CT scan showed this condition, but the MRI showed that I also had a herniated disc around the same area that the kidneys are. So, it was difficult to detect where the pain was coming from. My doctor sent me to a urologist who knew NOTHING about this condition.

Now, a few years later, I am having extreme pain, low grade fevers, and one urinary infection after another. I have been on antibiotics for 6 months now because as soon as one infection is treated, another comes up. I'm up all night because of frequent urination. And tests have shown blood and protein in my urine most of the time.

I guess I'm wondering if this is something I should be concerned about at this point. The symptoms seem to get worse over time, and I'm wondering if I should be concerned about long-term damage. What kind of doctor would know about this condition, if the urologist doesn't know anything?

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6 Replies:

  • Hi, I, too, have medullary sponge kidney. I also have renal tubular acidosis. Medullary sponge kidney makes us prone to infections due to the malformed medulla in the kidney. I've been suffering lately from re-curring infections, too. I suggest you get an appointment with a nephrologist ASAP. In my experience, urologists are woefully inadaquete when dealing with kidney problems (I'm sure not all are bad, but my experience has led me to stay away from them). Infections, especially chronic ones, can lead to kidney damage over time, so you would want to get blood work done that checks your kidney function (that's the first thing a nephrologist will order). Most people with MSK don't even know they have it as it's usually asymptomatic. But the chronic infections are usually how someone notices it.If you want to keep in touch here's my email address: adairpete@msn.comGood luck!
    Anonymous 42789 Replies Flag this Response
  • Hi, I have the same problem as you. I was diagnosed with MSK and they said that I would have terrible urine infections. I was in excruciating pain for 7 months before they finally diagnosed me with MSK. Unfortunalety, MSK wasn't the reason I was in soo much pain. I discovered that I had 9 herniated discs in my thoracic and lumbar vertebrae. The discs were putting pressure on my nerves that caused the pain to shift from my lower/upper back to my sides. I think you should make an appt. with your nephrologist immediately to see why nothing is working for the painful urination. I am sure there is something that can help you. Just hang in there. I am only 22 yrs old and have been dealing with these problems for a year and a half and I am constantly going to the ER from the pain and infections caused by this disorder. Hope everything works out for you!
    Brittany101 8 Replies Flag this Response
  • i too have got msk i have had kidney problems since i was 2 years old and when i was 19 they found a very large stone it wasnt untill i was 20 i found out i have got msk and both kidneys are compleatly covered and filled with small stones.I am in constant pain every day i am on pethodine,diclofenac,busscopan,dyhydracodine, co-dydramol i take these often and am in and out of hospital on morphine with the pain it is not very nice to have this as you know yourself im due to go into hospital it get cameras in my kidneys and bladder to see if they are missing anything by just doing scans and xrays.Ive been looking for people who have the same as myself but have only just found you all on this web site.
    Anonymous 42789 Replies Flag this Response
  • MSK sufferers, I also have been diagnosed with MSK, I want information. As most us us have noticed information is hard to find, so I am digging deeper. I am a journalism student at the University of Iowa, I am writing a story about MSK and the frustration of little and conflicting information. If you would like to help me get info out please email me at kara.n.bacon@gmail.com with your stories. Thank you. -Kara
    Anonymous 42789 Replies Flag this Response
  • I am 18 years old and I found out last year that I had MSK after I finally convinced my mother to take me to the doctor after having chronic back pain/ spasms in my mid to lower right back for a while. I tried everything, physical therapy, x-rays, blood tests, and then finally they became concerned about my kidneys when they found a lot of blood in my urine. I went in for a Cat Scan and was told that my pain was from MSK. I have NEVER passed a stone. Well once we figured out my problem I went off my acne medication and all of a sudden I was pain free for about 6 months. When I started in my first month of college the pain came back. I am on no medications and I am devastated that I have to deal with this. I read all of your notes and you all seem to have had bladder infections and passed stones. Is anyone else like me? Just back pain?
    Anonymous 42789 Replies
    • November 11, 2008
    • 00:55 AM
    • 0
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  • I just found out today that i have msk i have been in severe pain for many months sometimes i have stones or infections other times they say there is no reason to have pain. I cant keep going to the er they give me a bunch of bull now i finally have an answer but it has only left me with more questions and hardly any info on the disease i would like to hear from others who have the same frustrations as i do or those who may have some answers to my questions please email me at the following address stephanie.austin@ymail.com
    Anonymous 42789 Replies
    • December 10, 2008
    • 01:21 AM
    • 0
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