Discussions By Condition: I cannot get a diagnosis.

Kidney Pain, no diagnosis! please help.

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Real_eyes08
  • July 26, 2008
  • 03:32 AM

I'm 22, And I've been suffering with left Kidney pain for almost 3 years.I get frequent UTI's, I've had Pyelonephritis a couple of times, blood & protein in my urine, fevers, urine retention so bad, I had to be hospitalised to have catheter put in. Everyday, I'm just so tired, I don't seem to have any energy. Within in 30 minutes to an hour of waking up in the morning, I feel so drained, like I've had no sleep at all. I've had various tests, from ultrasound scans, Urodynamics, MCUG, 2x Cystoscopies and Blood tests etc, and came back negative. Apart fromUltrasound scan showed I have one Kidney bigger than the other, this was done back in 2006/beginning of 2007, so not sure what it is now, Dr didn't say if this was a normal thing or not. I assume my Kidney's are functioning properly, as I've not been told otherwise. Urine tests almost always shows up that I have +2 or +3 of protein in urine and +2 or +3 of blood in urine and my urine's pH is 7.5 or sometime its been 9.0 (again, I don't know if this is normal or not.) I have high blood pressure: lowest reading: 143/83 - Highest reading: 163/94. My symptoms are as follows:Sharp, stabbing, crampy pain in left Kidney, can radiate towards front of abdomen & navel. Fatigue, nausea, frequent headaches, I have anaemia, I sometimes have swollen ankles & a little puffiness around the eyes in the morning. Decreased urination, when I pass urine, I feel pain in the Kidney. Can anyone offer any advice? I don't know what to do! My GP & Urologist don't seem to know what to do either. I'm really concerned, because I don't know what the ***l is wrong with me!Thanks for reading.

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9 Replies:

  • Are you insured? I have been very ill with similar syptoms for over 35 years. I finally diagnosed myself but too late..my kidneys and other organs are failing. I have done MUCH research on the the poor, uninsured and underinsured. We are considered 'bottom feeders' Not a high priority if you're seriously ill(beyond colds, flu, broken arm etc) even if you are 'fortunate' enough to have medicaid/medicare. You're chances of being diagnosed are slim to none. I had over 150 doctors see me in those35 years and I have been on medicaid since 1996. What you are doing now, in my experienced opinion, is the best thing to improve your chances of diagnosis. Search internet sites. I hope you find what is making you ill. It sounds like kidney stones at the least. Be prepared though 'doctors' generally DO NOT like us to diagnose ourselves, it exposes them for the VOODOO doctors some of them are. I have been blacklisted from area hospitals. My medical records have blatant falsifications in them. I have to travel out of the Spokane medical moron community to Seattlle where I have been BLESSED to have Skilled Compassionate advocacy and medical help at Virginia Mason Clinic/Hospital. Keep looking and trust yourself!!! Linda:p
    gluck7104 8 Replies Flag this Response
  • Thanks Linda for reply. I live in the UK, so therefore have NHS treatment. I've seen Nephrologists, Urologists, pain management team etc. I'm taking meds for my blood pressure, pain and on a rotational low dose antibiotics every night for prevention of a UTI etc. But if I get a break through infection, then I'm back on high dose.I've been searching the net, And theres so many different diseases/illnesses of the Kidneys. A few seem to fit my problems exactly. Regarding kidney stones, my GP thought this is what I had, but scans don't show any stones. Sorry to hear about your suffering for 35 years, thats along time to be going through illness.As you said, Dr's begin to think you're mad or imaganing it, when you keep on at them! but there not the ones suffering every day like us! I see my Urologist again soon, and I will be demanding some answers and more tests, because I don't know how much more of this I can take.There must be something else they can do!Thank you for replying.I'll keep you posted on my progress if you like?
    Real_eyes08 10 Replies Flag this Response
  • I didn't realise the scope of this sites contacts! I surely hope that your problem is uncovered and that your life can be more full than mine. I believe that your age is 22, I was 19 when my illnesses began showing themselves. God bless you and if I can do research for you, let me know. I am to ill to do much, I will do research What ever you ask. Take good care of you! Believe in the wisdom God placed inside your body!!! Linda:p
    gluck7104 8 Replies Flag this Response
  • I didn't realise the scope of this sites contacts! I surely hope that your problem is uncovered and that your life can be more full than mine. I believe that your age is 22, I was 19 when my illnesses began showing themselves. God bless you and if I can do research for you, let me know. I am to ill to do much, I will do research What ever you ask. Take good care of you! Believe in the wisdom God placed inside your body!!! Linda:p
    gluck7104 8 Replies Flag this Response
  • There is a vastly underdiagnosed condition called nut-cracker syndrome. It is when the left renal vein is compressed between aorta and the superior mesenteric artery and for each heart beat is “cracked” as a nut in a nut-cracker. With time the vein can react to this compression by producing a sort of scar tissue which leaves even less room for the blood to pass. The symptoms are left flank pain; sometimes there is blood in the urine, sometimes only little which requires a blood test. Since left ovarian vein drains in left renal vein, it can also give pelvic symptoms such as pelvic pain, pelvic venous congestion or pelvic varicose veins.Venography (phlebography) is a way to diagnose it (but it requires a radiologist familiar with this condition, most of them are not), ultrasound is less suitable. It is not easy to treat. So far the severe cases have demanded venous surgery, but now the first cases have been treated with stent placement. Sometimes this condition can improve by itself, if collateral veins form around the compression site. Every time a patient develops a DVT in the left renal vein, this condition should be suspected and ruled out.Could this possibly of any help? Good luck!
    Felsen 510 Replies Flag this Response
  • I'm 22, And I've been suffering with left Kidney pain for almost 3 years.I get frequent UTI's, I've had Pyelonephritis a couple of times, blood & protein in my urine, fevers, urine retention so bad, I had to be hospitalised to have catheter put in. Everyday, I'm just so tired, I don't seem to have any energy. Within in 30 minutes to an hour of waking up in the morning, I feel so drained, like I've had no sleep at all. I've had various tests, from ultrasound scans, Urodynamics, MCUG, 2x Cystoscopies and Blood tests etc, and came back negative. Apart fromUltrasound scan showed I have one Kidney bigger than the other, this was done back in 2006/beginning of 2007, so not sure what it is now, Dr didn't say if this was a normal thing or not. I assume my Kidney's are functioning properly, as I've not been told otherwise. Urine tests almost always shows up that I have +2 or +3 of protein in urine and +2 or +3 of blood in urine and my urine's pH is 7.5 or sometime its been 9.0 (again, I don't know if this is normal or not.) I have high blood pressure: lowest reading: 143/83 - Highest reading: 163/94. My symptoms are as follows:Sharp, stabbing, crampy pain in left Kidney, can radiate towards front of abdomen & navel. Fatigue, nausea, frequent headaches, I have anaemia, I sometimes have swollen ankles & a little puffiness around the eyes in the morning. Decreased urination, when I pass urine, I feel pain in the Kidney. Can anyone offer any advice? I don't know what to do! My GP & Urologist don't seem to know what to do either. I'm really concerned, because I don't know what the ***l is wrong with me!Thanks for reading. Are you male or female? Were you on any medications before your symptoms started 3 years ago?DOM
    acuann 3080 Replies Flag this Response
  • This is in reply to last response by Acuann! I'm female, I've been on various medications for other medical conditions that I have. I'm Asthmatic, so I've been taking various meds for that since a young age. I take either tramadol or codeine for pain, as I have a condition that affects my knee's, And used to take Lansoprazole 30mg, twice daily for severe GORD/Hiatus hernia, but I had surgery last September for this. Still take low dose Lansoprazole. Don't know if its of any importance, I was told I had a heart murmur at the beggining of the year. In the last 3 years, I've been on & off different antibiotics mainly for UTI's, but also for chest/throat/sinuses infections.I'm also anaemic, so I take iron tablets (Ferrous fumerate or Ferrous sulphate)And this has been on&off for a few years.
    Real_eyes08 10 Replies Flag this Response
  • Anemia is sometimes linked to underlying babesia and bartonella - coinfections to Lyme - have you ever had your blood tested through IGeneX for Lyme and the common coinfections? These bugs can also feed off magnesium, which can leave you with excess calcium, and thus, kidney stones. The tests stink, which is why you should get tested through IGeneX or Fry. :( Hi, thanks for replying. I've been taking iron tablets on and off for approx. 4-5 years. I've never been on them indefinately, my longest time on them is 1-2 months. I have breaks in between, when my GP says that my levels have come back up, then I don't need them, but when my levels drop again, I have to start taking them. My Dr thinks the anaemia could be related the the blood in my urine.I've had numerous amounts of blood tests, so I don't know if the one you've mentioned(IGeneX) came into this or not, but I've never been told that I have Lyme Disease. My calcium levels have also been checked, and to my knowledge, there fine. One Nephrologist I saw mentioned PKD, (Polycystic Kidney Disease) due to the fact that I have PCOS, And said that the percentage is quite high for women who have PCOS, are likely to have cysts in other organs in the body, especially Kidney's. Since then, its never been mentioned again. I've just been fobbed off with various pain meds, antibiotics etc, and I'm still none the wiser of whats happening with my Kidneys.I will check the link you kindly gave, regarding "Lyme Disease".Thank you!
    Real_eyes08 10 Replies Flag this Response
  • Anemia is sometimes linked to underlying babesia and bartonella - coinfections to Lyme - have you ever had your blood tested through IGeneX for Lyme and the common coinfections? These bugs can also feed off magnesium, which can leave you with excess calcium, and thus, kidney stones. The tests stink, which is why you should get tested through IGeneX or Fry. :(Hi, thanks for replying. I've been on & off iron tablets for approx. 4-5 years. I've never been on them indefinately. The longest period of time on them was 1-2 monts. When my GP is happy that my levels have come up, then I can stop taking them. I have a supply of iron tablets, so that when my Dr says my levels have dropped, I can start them straight away. I get breaks in between, where I don't need to take them for about 2 months, but not much longer than that. My GP thinks that my anaemia could be related to the fact that I have blood in my urine.Regarding Lyme Disease, it seems to fit my symptoms greatly, although I don't ever recall having a tick bite or any other insect bite, And I've never been abroard for holidays. Amongst the numerous blood tests I've had, I don't know if the "IGeneX" that you've mentioned , was one of them. My calcium levels have also been checked, to the best of my knowledge, there fine! One Nephrologist I saw in February, mentioned PKD (Polycystic Kidney Disease) for the simple fact that I have PCOS, he said, the percentage was quite high for women who have PCOS, are at higher risk of having cysts on other organs, especially the Kidneys.But since then, its never been mentioned again to me, so I'm still none the wiser of whats happening with my Kidney's.
    Real_eyes08 10 Replies Flag this Response
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