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I was diagnosed with Medullary Sponge Kidney in April this year after an x r...

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Guest
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I was diagnosed with msk in April this year after an 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 controlled 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 usual pain control. a week later back in again with severe pain given morphine as usual and had the same tests repeated including a Rena gram 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 which 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 until and a stone was found, this one caused a blockage and I had a naefrostomy 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 what’s going on. In the mean time I am on slow release morphine twice a day, sevradol(morphine) for breakthrough and violator. God knows where this will end. It frustrates me as this is taking over my life. I don’t understand 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:23ec00fb7e]This message was automatically imported from the original Patient Experience[/i:23ec00fb7e]

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  • Guest
    Guest

    Posted

    HI.I DO HOPE YOU ARE FEELING BETTER.I LIVE IN THE U.S.,I WILL SAY IN THE U.K. THE PROBLEM IS TAKEN MORE SERIOUSLY, EXCEPT FOR ONE THING...DOCTORS CANT UNDERSTAND WHY YOU HAVE CHRONIC PAIN. I HAVE HAD CHRONIC PAIN SINCE CHILDHOOD, I AM 47 AND IT HAS ONLY GOTTEN WORSE.MY 8 YR. OLD SON HAS HIGH B.P., AND THE DOCTORS WANT HIM TO HAVE HIS KIDNEYS CHECKED OUT.I DO NOT KNOW IF THERE IS A CORROLATION BETWEEN THE TWO.YOUR TREATMENTS HAVE BEEN QUITE AGGRESSIVE, I AM SORRY YOU ARE STILL SUFFERING.ALL I GOT WAS 'THE PAINS IN YOUR HEAD GO TO A THERAPIST.'IN ADDITION TO ALL THE STONES, SCARRING, AND INFECTIONS AND NOW CYSTS, IT DOES NOT SEEM TO GET BETTER.IF YOU FEEL YOUR DR. IS NOT LISTENING TO YOU, DO NOT MAKE THE MISTAKE THAT I DID, JUST IGNORE THE PROBLEM.I DO HAVE A FEELING THEY ARE WORKING QUITE HARD TO TRY TO HELP YOU, IN COMPARISON TO MY OWN EXPERIENCES.I DO NOT KNOW YOUR AGE, WHEN THE ONSET BEGAN, AND FOR HOW LONG.ARE YOU ON A SPECIAL DIET, AND SOMETIMES THE MEDS YOU ARE GIVEN CAN CREATE OR WORSEN YOUR PROBLEM, AS THEY HAVE MINE.I AM SORRY FOR YOUR PAIN, AND CAN CERTAINLY RELATE TO IT.IF YOU WOULD LIKE TO E-MAIL ME, IM AT **** DONT GIVE UP HOPE!BE WELL...RACHEL:D

    [i:09a1a82cf7]This message was automatically imported from the original Patient Experience[/i:09a1a82cf7]

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  • Guest
    Guest

    Posted

    It is interesting to see someone going through exactly the same as me. I couldnt tell you how many times i have been rushed into casualty having to explain the same things over and over again whilst riving in agony. to be given pain releif and told its not a stone. To be sent home then rushed in again and to pass a stone. The pain is becoming constant with no let up. Where is all this going to lead to. I have had to give up work and am compleately fed up.No one seems to understand how painfull this condition is.
  • Guest
    Guest

    Posted

    I feel very sorry 4 all the people in the experiences I have just read as I was diagnosed with MSK 8 years ago, I am 25 years old and have been in hospital half a dozen times with excrutiating pain and blood in the urine. I live in the UK and the doctors are very helpful once I am admitted to hospital (not as much in the ER), the experiences I have read like yours are people living in the US and you mdont seem to be taken very seriously which must be awful as I can certainly relate to the pain you must get. All i can say is keep pestering and go to the ER every time u have any pain and hopefully they will start to get serious like they did with me, now i have routinely x-rays and consultations with a specialist every 6 months to c if any new stones have developed, I also had a procedure to take out some stones that were blocking my kidney, which they picked up on a routine check. I was given some advice from some 1 suffering with MSK on holiday to drink barley water as it has something in it that helps(cant remember exactly how, sorry) but he seemed to know what he was talking about. I WISH YOU AND EVERYBODY LUCK IN THE FUTURE OF GETTING BETTER TREATMENT AND WISH I COULD HELP MORE. Lisa xxxxx
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