Discussions By Condition: I cannot get a diagnosis.

kidneys or not?

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • January 20, 2007
  • 05:16 AM

I am happy that I found this site, however I am puzzeled at the same time. I am having troubles with a difference of opinion among doctors. Let me begin with a brief history. I have had chronic kidney troubles. When I was 18 months old I had severe UTI and kidney infections resulting in the discovery of a duplicated collection system on my left side. I under went a ureter reimplantation into my bladder on both sides and basically have a odd renal system. My left kidney has dual poles with two ureters and my right kidney sits lower than usual resulting in a kink in that ureter. I have gone through life dealing with UTI and kidney infections with little to no relief. While I was pregnant I had complications with my kidneys resulting in hydronephoro and hydroureters prompting the need for nephrostomy tubes (2 in the left 1 in the right). Had all the signs of possible stones, passed calculi but never a formed stone. The tubes didn't work all that well and ureter stents were placed instead till 2 weeks post-partum. Since giving birth in 2002 I have been in the run around with doctors and my kidneys. When ever they seem to flare up they exhibit the same symptoms as stones, yet nothing has passed and there has not been an obstruction seen on IVP, x-ray or CT, which makes for more frustration on me and the urologists. So here I sit again..same pain, same symptoms, with out infection, with out any stones, bewildered. My last visit to the urologist resulted in another CT and the DR saying he had no clue what was going on. I was then sent to a Internal Med DR who suggested that it was a buildup of gas resulting in what he called Splenic Flex Syndrome. What the ***l? How can it go from kidneys over all these years to something to do with a curve in my colon? There was no relief from the internal med DR (he sent me home with smooth muscle relaxers) and suggested that I get a GI consult. So here I sit, no answers and doped up on pain killers wondering where do I go from here and what on earth could it possibly be. I am not looking for medical advice or treatment, but would like to hear suggestions if anyone has any.
Thank you in advance....
confused with kidneys

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5 Replies:

  • Finally after 9 years searching, somebody that has had a similar issue to mine. (unfortunatly though)I am 34 yr old female. Check out "my story" in tell your medical story forum by miserableMOE. That is me, MISERABLE. 34 yrs daling with these kidneys. Been diagnosed with kidney reflux in both kidneys around 8 yrs old. No Doctor ever told me NOT to get pregnant. I did at 25. Had 6 stints, which all calcified and obstructed kidney. 9 kidney stones at that time and have 3 left to pass. Fianlly on Christmas Eve 1997 Dr. went to place nephrostomy tube, after kidney blew up like a football! ***k missed kidney and punctured my lung! Tried again and deflated my kidney so that I had urine ging through my blood stream at 22 weeks pregnant! Day after Christmas new Dr finally got Neph. tube in. Then would almost every other day be going to ER to have them flush it as it would become blocked with sediments. To this day, I have excruciating pain in my right flank area. I have been told that there is no way that I can "feel" my kidneys! Bullsh*t, yes I can. I was awake for all of those procedures. Did anyone ever tell you not to get pregnant? Do you just have one child? Unfortunatly I could only have the one. They said my kidneys would never handle another pregnancy. Sorry to hear of all of your troubles but please understand I have been on the internet for 9 years looking for someone to understand my pain. None of my Dr.'s, nephrologists, urologists, radiologists had ever seen a case like mine. I have felt alone and crazy for these last years. I'd love to hear from you again. Hang in there
    miserableMOE 52 Replies
    • January 20, 2007
    • 06:41 PM
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  • Hi, I just stumbled upon this thread and am hearing alot of similar struggles with what I seem to be going through.Ok, where do I start...in the last year or so, I've had an average of at least 2 UTIs per month...that's AVERAGE. I'm recovering from one with antibiotics...and a few days later...sure enough, it's back again. Sometimes it spreads into my kidneys and that recovery is slow and painful. Also in this last year or so, I've dropped in weight 100 lbs without trying. I was fairly overweight before and suddenly it just started dropping off by about 3-7 pounds per week some weeks. I was 295lbs and now am 195lbs.First the doctor said I may have lupus...then it was kidney stones...then it was ovarian cysts...endometriosis...IBS...I don't know what is going on anymore. I'm not getting enough testing or answers from my doctor.Earlier on in my childhood, I had surgery when I was 3 years old to remove a urinary tract blockage. I was very ill and in hospital for 3 months. My mom was told that my immune system was never going to be 100%. She was also told that one of my kidneys has an extra ureter or something of the like. After surgery, I had chronic bronchitis and had to see my pediatrician once a week for a few months. I'm going into my history here in hopes that someone else has had a similar health experience. This has been a life-long struggle for me and it's coming back to haunt me as I approach my thirties. This is ruining my life. SOmetimes I don't even go to the doctor anymore for an infection until it's too bad to leave it any longer. I know it will just be back in the near future. What's going on? I'm getting very depressed and just don't want to do anything anymore. Doctors don't seem to take much seriously anymore.Also, I've recently had an ultrasound to check for ovarian cysts. I've been in so much pain lately (and I'm used to pain) and I cannot find the cause of anything ! It's soo frustrating. I just want diagnosis and permanant healing.I'm just trying to find others who suffer the same ways and trying to find answers.
    Anonymous 42789 Replies
    • January 20, 2007
    • 06:48 PM
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  • Confused Kidneys here...They told me while I was pregnant and going thru all the crap in the hospital and the surgeries.. not to have kids.. idiots. I was 20 when I had my son. I was never told prior that I shouldn't have concieved and carried. I only have one child and was advised not tohave another one cause my renal system would not support it. I am now 24 and would consider adoption if it meant to miss that expierence while I was pregnant. I too was awake while they implated the nephrostomy tubes and felt every bit of it. What a haunting expeirience.I m happy to find that I am not the only one that isn't crazy. I have struggled with this and I too will wait till I absolutley have to go to doctor for a UTI or Kidney infection cause anymore its pointless to spend the co pay for my doc to tell me what I already know and send me home with antibiotics to have it treated only for it to come back in two weeks. Wow.. frustrating as ***l is how I see it. So Now what... Where to go from here and what doctor is going to know about what to do to solve this problem. I am so sick of missing work and not being able to enjoy my life with out this pain in the **s sidepain that pokes its head around when its not welcome.
    Anonymous 42789 Replies
    • January 20, 2007
    • 09:06 PM
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  • wih I had a brighter side of the story to tell ya but of course, I don't. At one time I do remember the Dr's wanting to take my kidney out, cauterize all the nerves around it and then replace my kidney. For what? Another surgery with no guarentee of relief? If I feel like somebody is stabbing me with ice picks now what would it be like after that one? If I should ever come across something helpfull, I will be sure to let you in on it. Right now I do feel really bad for you being so young with a little one and this horrific pain. I have no positive solutions. There was a time I would gobble up the pqain pills like they were candy looking for relief. That was not good and the pain was still there after they wore off. Good Luck and take care ! What state do you live in? I am in Pittsburgh Pennsylvania
    miserableMOE 52 Replies
    • January 21, 2007
    • 00:05 AM
    • 0
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  • I am around Omaha Nebraska. I feel like I should be goin through detox or something with the amount of pain pills my doctors give me. i dont like taking pain killers all the time just to be able to move slowly around the house to take care of my rambunctious 4 yr old. I am going to see another urologists, a new one, next week hoping that by some chance in ***l he might have a clue. My eyes are about to go crosseyed from searching any possible cause with this pain. I want to pull my hair out.
    Anonymous 42789 Replies
    • January 21, 2007
    • 03:01 AM
    • 0
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