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My daughter needs help. Please. Kidney pain with perfectly normal panels.

Posted , 32 users are following.

matthew04746
matthew04746

My daughter, 23, has had kidney pain for over 10 years. She has been to many doctors. Please excuse the fact that I dont know all the proper names for all the tests and such, but she has had blood tests, ultrasounds, live CT/X-ray thing to check urinary tract functions, something where they filled her bladder up with fluids for some flow check, etc., etc.

She doesn't always tell me things, but she talks to her mom and then I hear about it. My daughter is tired of the same tests over and over. I am tired of seeing her in pain all the time.

She just had a blood panel done and everything is in normal ranges. Kidney and liver were normal.

I was hoping someone out there may have some insight or information about what else may be causing her to have so much pain so often.

Thank you for taking the time to hear me out.

Concerned Dad

1 like, 47 replies

47 Replies

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  • chris62384
    chris62384 matthew04746

    Posted

    Hi, Matthew -- Well, given that all the kidney tests seem to be coming back normal, let's go back to the beginning. . . what exactly made you (or she) think your daughter's pain is "kidney pain"? Where exactly is the pain? What does it feel like? Is it chronic, or intermittent? If intermittent, does anything seem to trigger it?

    Also, there are kidney-related problems that are not kidney disease, and aren't reflected in such levels as eGFR and BUN. I'm guessing the doctors did check for this and ruled it out (and her pain would be absolutely excruciating), but did they consider kidney stones? Also, did they consider a kidney infection? (They usually would test for blood, pus, and bacteria in the urine and/or do a urine culture, to see what kind of bacteria are in the urine.)

  • MrsO-UK_Surrey
    MrsO-UK_Surrey matthew04746

    Posted

    Matthew, I was going to suggest exactly the same thing as 'chris62384' - kidney stones.  Is her pain intermittent or relentless?  If the former, it could well be that she is making the stones and they are dispersing by the time of the scans etc.  Does she drink plenty of water - essential normally for all of us but especially where kidney stones are concerned.  A slice of lemon added can help.  Otherwise, it seems that they have been thorough with the scans etc so it doesn't look much like kidney disease per se.  Has she got any other symptoms? 

    • matthew04746
      matthew04746 MrsO-UK_Surrey

      Posted

      Thank you for your response. She has been tested for kidney stones(ultrasound) with negative results. I understand that they may disperse(or whatever) between the time of pain and the test, it's just that she has so many symptoms that I can't imagine it being as "simple" as that.

      On a daily basis she has, in her words, dull back/kidney pain(she has had kidney infections before and knows how that feels). Sometimes, the pain is more severe and causes light headedness and nausea.

      All the other symptoms are most days, fatigue, night sweats, urgency to pee, getting up at night to pee. She also gets a bad case of hives often. She says they seem to be worse when more symptoms are occurring.

      I know this is a wide variety of symptoms. She has had allergy tests for the hives, but I believe the best answer for the hives has been, "She might be allergic to wheat." She has cut out anything that may be causing hives, which hasn't helped.

      I really want to thank you again for taking the time to help out.

  • mena55671
    mena55671 matthew04746

    Posted

    Matthew:

    Ditto per the other 2 responders!!  If all of her panels are coming up "negative" then she needs to get a hold of a diagnostician (Internal Medicine) who can hone in on all symptoms.  I would think that if any of her labs display something positive then that surely signifies something is amiss.  If the BUN lab is positive than it surely would be something with her kidneys.  But CBC's, etc. out of range would signify a problem with her white blood cells and pretty much says she has type of infection somewhere in her

    body.

    You need to take her to a reputable hospital, preferably a teaching/research hospital, as they love exotic cases.

    Just take charge of her health and you won't regret feeling guilty if she has a condition that could have been diagnosed earlier.

     

    • matthew04746
      matthew04746 mena55671

      Posted

      Thank you for your response. I didn't think of a teaching hospital. We have San Francisco's teaching hospital within 30 minutes. Thanks again.

  • mena55671
    mena55671 matthew04746

    Posted

    Thanks for your response.  

    You are sitting in the lap of the best doctors in the US...San Francisco. You are so fortunate because you have the UCSF Medical Center, including Kaiser Permanente.  UCSF is ranked #6 on the BEST HOSPITALS HONOR ROLL for 2018-19.

    Good luck and let us know daughter's  outcome.

  • Guest
    Guest matthew04746

    Posted

    Hi Matthew

    Why does your daughter think the pain is in the kidney?

    Has anyone ruled out other problems with pain in the associated area?

    Left upper back could be muscular, spleen, stomache even lower lobe of lung, right upper back could be gallstones, liver, billary colic and again lung or musculoskeletal.

    I only mention this as if you focus on one thing only you may miss the real cause of pain.

    All the tests for kidney are normal maybe it would be worth an MRI scan for a proper diagnosis.

    Good luck I hope your daughter finds a diagnosis and treatment soon.

    • matthew04746
      matthew04746 Guest

      Posted

      Thank you for your reply. Up to this point in time, she has been following doctors plans and recommendations. I know that diagnosing a medical condition can take time, but it seems we have been running in circles up till now. Your suggestion is exactly why I've come to this forum. I've been wanting ideas for we places to look, different tests to consider.

      Thank you for taking the time to help us out.

      Matthew

    • Guest
      Guest matthew04746

      Posted

      Another suggestion is to check her spine, from 13yrs to 23yrs is a growing time, I wonder if she has a scoliosis ( slight sideways curvature of spine) which may impact on just one side. Again just throwing out a suggestion, perhaps a private body MRI maybe your only option but expensive, perhaps try and persuade a Dr to arrange this which would save cost on repeated isolated investigations.

      Good luck x

  • DLAZ
    DLAZ matthew04746

    Edited

    Look up nephroptosis and Loin Pain Hematuria syndrome. I went through something similar and ended up diagnosing it myself and then by an actual doctor. 
  • DLAZ
    DLAZ matthew04746

    Posted

    I would also look into mast cell diseases/syndromes. MCAS and mastocytosis causes a wide array of symptoms including the ones you listed. I have EDS which is hard to diagnose, and they say “when you can connect the issues, think connective tissues”. I was undiagnosed my whole life until the age of 32, and the best advice I can give is to research and don’t give up! 
    • matthew04746
      matthew04746 DLAZ

      Posted

      Thank you very much. I will definitely have her look into that. It will be a new thing to check for. Thanks again.
  • brittany24333
    brittany24333 matthew04746

    Posted

    did toy find any scars for you daughter???? I'm 10 years sammmme!!! I cant deal anymore. the pain is excruciating I'm in Idaho. no teaching hospitals. so hopeful you found answers n could help me

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