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I was diagnosed with Medullary Sponge Kidney in april this year after a x ra...

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I was diagnosed with msk in april this year after a x ray and having blood in the urine. since july i have spent 11 weeks in hospital. first i got told i had no stones in my tubes so got my pain conrolled with tramadol and voltarol and morphine for breakthrough then sent home. days later i was back and the same again, ivp's, ct scan, and every other scan you can think of but no stones in sight so doctors just dealt with the pain. sent home again with usuall pain control. a week later back in again with severe pain given morphine as usual and had the same tests repeated including a renagram which showed my right kidney was a lot smaller and no draining as it should so they decided to put a stent in to let stones pass easier but when they got inside me i had a few large stones in my tubes wihch they blasted but had to leave one which was stuck in the meat of the kidney. i felt a bit better after that but was short lived and was readmitted to hospital with the usual severe pain and a temp, this time i was treated for a uti and a stone was found, this one caused a blockage and i had a naefrostoy tube fitted and sent home, but the tube then got blocked at the top with small stones so was removed, home for a few days again then usual pain arrived back, this time the doctors were saying that i could not have x rays or they were not willing to repeat scans so i am now waiting to go in for a camera to be put into the kidney to see whats going on. in the mean time i am on slow release morphine twice a day, sevradol(morphine) for breaktrough and voltarol. god knows where this will end. It frusrates me as this is taking over my life. i dont understant why the doctors say that msk does not cause pain like this! it obviously does!

i would love to hear from anyone who is going through much the same and it would be even better to hear from someone who has got some good news about this disease.

[i:d70c666d54]This message was automatically imported from the original Patient Experience[/i:d70c666d54]

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4 Replies

  • amberdawn_27
    amberdawn_27

    Posted

    I am 23 yrs old single parent and was dx with MSK last Decemeber. I too am in and out of the hospital with no significant signs of stones or uti's. I am usually given demerol or morphine until I am able to control pain on vicodin. My pain was intermittent hitting about every 12-14 weeks and I would be hospitalizied. I too have had stents as well as a nephrostomy tube. I have been dealing with the chronic pain for the last 5 years, and as I said was just diagnosed last decemeber. I just was released from my last hospitlization last sat. and this time the hospital (which is my insurance holder, as well as employer) has informed me they will no longer admit me for pain management next time I need it. Although I can't go through a pain clinic because my pain is intermittent no clinic would like to take me on a as a patient. I am at whits end. Up until this last visit my pain was every 12-14 weeks, after a week of IV meds and a week of Vicodin at home to follow, the pain disappeared like magic!!! Anyone with suggesstions? I wouldl ike to know how you were able to come home with a morphine slow drip?! they are weary bout giving me vicodin or placing me in the hospital for pain management period!!!

    [quote:5c7ed033bc=\"L. \"]I was diagnosed with msk in april this year after a x ray and having blood in the urine. since july i have spent 11 weeks in hospital. first i got told i had no stones in my tubes so got my pain conrolled with tramadol and voltarol and morphine for breakthrough then sent home. days later i was back and the same again, ivp's, ct scan, and every other scan you can think of but no stones in sight so doctors just dealt with the pain. sent home again with usuall pain control. a week later back in again with severe pain given morphine as usual and had the same tests repeated including a renagram which showed my right kidney was a lot smaller and no draining as it should so they decided to put a stent in to let stones pass easier but when they got inside me i had a few large stones in my tubes wihch they blasted but had to leave one which was stuck in the meat of the kidney. i felt a bit better after that but was short lived and was readmitted to hospital with the usual severe pain and a temp, this time i was treated for a uti and a stone was found, this one caused a blockage and i had a naefrostoy tube fitted and sent home, but the tube then got blocked at the top with small stones so was removed, home for a few days again then usual pain arrived back, this time the doctors were saying that i could not have x rays or they were not willing to repeat scans so i am now waiting to go in for a camera to be put into the kidney to see whats going on. in the mean time i am on slow release morphine twice a day, sevradol(morphine) for breaktrough and voltarol. god knows where this will end. It frusrates me as this is taking over my life. i dont understant why the doctors say that msk does not cause pain like this! it obviously does!

    i would love to hear from anyone who is going through much the same and it would be even better to hear from someone who has got some good news about this disease.

    [i:5c7ed033bc]This message was automatically imported from the original Patient Experience[/i:5c7ed033bc][/quote:5c7ed033bc]

  • sarand
    sarand

    Posted

    Hi There

    I do feel for you both as MSK is no fun when it starts. I have known I have had MSK since birth and im 41 now. My gran noticed I had one side bigger than the other and apparently they did tests and found this is one of the linked medical conditions linked to MSK (dont worry not everyone has it).

    I have had more kidney stones and UTI's thank I hae had hot dinners sad it does settle and you will get pain free time when it settles. I am constantly getting UTI's and I am now on rolling antibiotics which seems to do the trick (when I take them)

    Just last week I was in hosp with a large stone and I am now nurding a stent waiting for intrusive lythotrypsy under general... There is no getting away from this side of things in sorry... However your diet plays a big part and fluids... Whatch what you eat and drink plenty is my advice...

    If you have any questions then fire away If I can advise I will xx

  • ashelynnhope
    ashelynnhope Guest

    Posted

    Hi! I just got diagnosed with MSK back in February of this year. I am a 17 year old female with no other family history of MSK. I am an athlete and received my first symptoms of MSK an hour after a soccer game where I had taken a pretty strong hit to my back/kidney region, all of a sudden I was collapsed while talking to my mom screaming in pain. She rushed me to the hospital where they found blood in my urine and did a CT scan on me. The doctor had never seen anything like it when they got my scans back. He came in the room panicked and told my family and I that I had at least 50 kidney stones in my kidneys.  I was later discharged from the hospital that same night and got a referral to go see a urologist. He then read my medical history and reviewed my scans and told me I had Medullary Sponge Kidney Disease and there was "nothing he or I could do about it." So since then I have been back to the emergency room at least 5-7 times.  each time I go is the same thing.  They get my pain under control, tell me I'm fine and that my levels are fine. And that is probably "just back pain." The pain I experience is excruciating as I'm sure those of you with MSK already know, but the weird  thing is that I have never passed a single kidney stone I just feel this excruciating pain that starts in my kidneys and makes its way to the front. I have changed my diet, and drink plenty of water. 

    If anyone can help or has any tips for me it would be greatly appreciated since my doctors don't even know what's going on. Thank you 

    • sarand
      sarand ashelynnhope

      Posted

      Hi, don't worry i have had this all my life and I'm now mid 40's. The simple fact is there is nothing we can do to stop it but you may be able to control it. The simple rules are drink plenty of water every day! I take potassium citrate twice a day. I see a urologist twice a year and he checks on how many and how big my stones are. If they look like they are getting too big then they will laser them with lythoteipsy this isn't as bad as it sounds it is basically sound waves that shatter the stones.

      Ask your urologist to send you to a kidney specialist (if you are in uk) this is someone who analyses your kidneys. Mine really helped me. 

      It is a horrid disease but if you look after yourself and get it under control you will lead a normal life... I have had ups and downs but the past 2 years I have reall been in control with it.  Good luck and and ask any questions you want x

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