searching for a diagnosis

Hello, I'm Paige.  I'm 37 and began passing stones when I was 18.  Had lithotripsy at that time.  I've passed a number of stones over the years, but didn't need help again until last October 2010 when I had one removed with the "basket" procedure where they go up and pull the sucker out.  The pain after the procedure was 10 times as bad as the stone before the procedure and I ended up in the hospital for 3 days in pain.

I've been told for many years that I have MSK and that my kidneys are chock full of stones.  I've always been told to drink more (which I'm horrible at) and if they stay put they're no problem.  The problem occurs when they move out and cause some obstruction.  So I've just not worried about it much.

Until November 2011.  It started with pain at a low rib on my right side.  Within a week it was in my back, right flank pain, just like the pain I get when I have a stone on the move.  And when I pressed deep under my right ribcage it felt felt so painful.  I can press right on the spot through my upper abdomen and I want to jump off the table or double over.  

At first an x-ray showed a probable stone, but in a subsequent x-ray and CT there was no stone on the move.  Just my collection in my kidneys.  So I insisted that we check my gallbladder (even though I didn't have classic gb symptoms) because I felt like I was pressing on my gallbladder under my right ribcage.  Ultrasound and HIDA scan show a healthy GB.  I went to the ER at one point complaining of KS pain.  They couldn't find one but they gave me oxycodone, took a culture and put me on an antibiotic just in case.  I've seen two urologists, but they don't act like there's anything wrong with me.  My PCP is trying to be helpful and thinks that since it's not my gallbladder it must be my kidneys.  So he's sending me to a third urologist.  I couldn't get a callback from the first one so I switched to another one at U of M here in Michigan.  The second one said he could do a laser procedure if I wanted, but didn't seem to think that it would really help my pain.  He said he didn't know what it was from.  That's when I pushed for the CT which came back showing a perfectly healthy midsection.  I am thankful for this, but cried when I heard the news since it didn't get me any closer to a diagnosis.

So here are my symptoms:  dull, flat strong pain punctuated by hard shooting stabbing pain, usually associated with movement.  I do a lot of moving, I have two children in wheelchairs.  The pain is sometimes not there when I first wake up, but as the day progresses the pain gets worse and worse.  It's in my back, like classic KS pain, and under my ribs, deep inside, if I push on that area.  It is very painful to touch from the abdomen side.  That pain seems to radiate out to the right side of my waist and rib.

I'm on oxycodone, 10mg (325 tylenol), but I just keep getting refills and it doesn't help enough.  ANd it makes me drowsy and lethargic.  I've been on it for 2 months now!  Sometimes I have to choose between being in pain or being alert.  The pain is making me cranky (imagine that) since it's not really under control.  Sitting very still helps.  But who can do that?  

After almost 4 months I'm very discouraged about getting a dx and what it might be.  But there've been a lot of pictures taken of me and nothing is wrong.

I do have ulcerative colitis (since I was 18) so I could relate to some of the posts about chalking it up to irritable bowel and then leaving it at that.  One doc told me that if they can't find a cause he'd have to dx me with functional bowel disease.  Hahahaha.  That's just Dr. talk for "we don't know what's the matter with you."

So are these the symptoms that most of you are experiencing?  If they are it would be so helpful for me to take some of this information in to my urologist next Tuesday.  SOrry that was a long story.  Hope you made it to the end!

Paige

[bambamm]

Hello Paige and welcome. I have MSK too and am going to send you a personal message.

Mary

[JustAmanda]

I suggest that you have ur PCP or Urologist refer you to a Nephrologist.  That is what I am now doing... Ur pain does sound very similar to what I deal with on a daily basis, only mine is on the left & the doctors won't give me ANYTHING for the pain.... so the last 3 months have been extremely painful for me physically and emotionally for everyone in my household!!!  Cranky isn't even the word to describe my mood at this point... The actual pain, the aggravation at my urologist & the ER, and stress of not being able to be the mom & wife I should be because of it all is really getting to me.  I had an appt with my PCP today and told him about the repeated CT scans the urologist has been doing and he told me that he is going to set me up with a Nephrologist b/c it sounds like the urologist is just not finding what he wants to see rather than looking where the actual pain IS and trying to find the source.... I wish u luck!

[ChitChatNine]

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C~