Discussions By Condition: I cannot get a diagnosis.

i feel so ill all the time now!

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: lynxlynxlynx
  • November 15, 2008
  • 04:40 PM

i have a list of symtoms that seem to not neing taken too seriously by any gp.
i have blood in my urine now for 4 years. no signs of infection is ever diagnosed, kidney scans were clear, as were x rays.
i have very accute, intermittant pain in the lower abdo and in my private parts. i have abdominal swelling all the time now that gets bigger threw out the day. i look pregnant!!
my body has changed in appearance now that my breasts are empty and saggy.
i have missed 2 periods, but have all the uncomfort associated with my period. i had a possitive menopause home kit, but the doctors blood tests for menopause came back normal.
i have heat flushes day and night now. these started getting more noticeable in last 3 months. i am dizzy alot, without obvious reason and some days i just dont wanna get out of bed.
im scared that i have cancer!!
does anyone else have these problems?

i also now have trouble passing urine as the flow is slow

please someone else must have a gp that nows what this is!

what have they said yours is??

vic

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18 Replies:

  • How much blood ? Is it visible or does it only come up when tested ?The abdomen swelling could be due to kidney problem, because if your losing blood then you are losing protein as well, and if you lose protein then you start getting swelling (should be around your ankles too). The rest sounds to me like menopause. But I would seriously recommend getting the kidney problem checked again because it sounds like its getting serious.
    gungwane 62 Replies
    • November 15, 2008
    • 05:33 PM
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  • How much blood ? Is it visible or does it only come up when tested ?The abdomen swelling could be due to kidney problem, because if your losing blood then you are losing protein as well, and if you lose protein then you start getting swelling (should be around your ankles too). The rest sounds to me like menopause. But I would seriously recommend getting the kidney problem checked again because it sounds like its getting serious. its sometimes visible, but always picked up on a test. the docs have ruled out kidney and menopause. i thought it was that too. but they dont seem that bothered to find out what else it could be.
    lynxlynxlynx 8 Replies
    • November 15, 2008
    • 05:44 PM
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  • They can't have ruled out kidney. If there is blood in your urine you have a serious kidney problem already its called glomerulonephritis. And they must find a cause for it they can't just 'rule it out'.
    gungwane 62 Replies
    • November 15, 2008
    • 05:47 PM
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  • How have they examined the kidney? Is there protein in urine? 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 sometimes 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), 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. Good luck with your health!
    Felsen 510 Replies
    • November 15, 2008
    • 06:41 PM
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  • How have they examined the kidney? Is there protein in urine?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 sometimes 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), 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. Good luck with your health! in answer to your question, they have only done a scan, x rays and bloods. from that they told me it wasnt kidneys. thank u for the information, i shall be talking to my gp some more.
    lynxlynxlynx 8 Replies
    • November 15, 2008
    • 08:43 PM
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  • They can't have ruled out kidney. If there is blood in your urine you have a serious kidney problem already its called glomerulonephritis. And they must find a cause for it they can't just 'rule it out'. ive been saying the same thing to them now for the last 4 years lol. all i know is im having ***l to try to get them to do more tests. they have done bloods, x rays and scan, and from that they say it is not kidney. i am so swollen as we speak, it gets bigger threwout the day. some times even my ankles, feet and hands swell too. im scared!!
    lynxlynxlynx 8 Replies
    • November 15, 2008
    • 08:46 PM
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  • Felsen might be right!
    Anonymous 42789 Replies
    • November 15, 2008
    • 09:16 PM
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  • A scan, x rays and bloods will not show the nut-cracker. You need a referral to a vascular surgeon or a vascular radiologist and it must be a good one. Where in the world are you? Also I forgot to mention, that there is often protein in urine.
    Felsen 510 Replies
    • November 15, 2008
    • 10:42 PM
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  • A scan, x rays and bloods will not show the nut-cracker. You need a referral to a vascular surgeon or a vascular radiologist and it must be a good one. Where in the world are you? Also I forgot to mention, that there is often protein in urine. im in gosport, hampshire, england. im having so much trouble getting a gp to listen that im afraid i wont get the refural that u suggest. will continue to try.
    lynxlynxlynx 8 Replies
    • November 16, 2008
    • 00:33 AM
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  • on top of everything, did you get your thyroid checked???
    Monsterlove 2921 Replies
    • November 16, 2008
    • 06:23 AM
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  • on top of everything, did you get your thyroid checked??? i have, and it was all clear. every test that has been done has come back ok. there was a borderline result in fsh levels for hormones, but the doctor said that didnt prove that it was menopause. im at a lose now. i guess i am clutching at straws now by trying this site lol. i have also gained 1 stone in weight in the last month which dont make sense as im on a very strict weight lose program with slimming world, and have been now for nearly 3 years. this i think is either connected to the water retention or the lack of my monthlys. not sure.
    lynxlynxlynx 8 Replies
    • November 16, 2008
    • 02:00 PM
    • 0
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  • I perfectly understand your problem. It can be a touchy situation when a doctor realizes that his patient knows more that he does. One of the best vascular surgeons familiar with nut-cracker is Olivier D’Archambeau at Antwerp University HospitalWilrijkstraat 10B-2650 Edegem, Belgium www.uza.be Olivier.DArchambeau@uza.be Is there a chance that you can go there? Or at least write to him? He is very kind. He helped me to diagnose my nut-cracker 5 years ago. I wrote an e-mail to him and was kind enough to answer. He has sent me his scientific paper on nut-cracker. His knowledge in this area is absolutely impressive. You know that since England and Belgium are part of EU, you have right to seek health care in the whole EU and you will get the money back from British social authorities. There is a court decision on this. Is there any other way I can help you? Please let me know.
    Felsen 510 Replies
    • November 16, 2008
    • 02:05 PM
    • 0
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  • i have so appreciated the time u have taken over the last couple of days to help me with this problem. i will email this chap now and let u know how i get on. anything is worth a try at this point. the best part is its been so nice to find people out there that actually listen. maybe if the gps tried it we might all feel safer in their hands. thank u again vicky
    lynxlynxlynx 8 Replies
    • November 16, 2008
    • 05:04 PM
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  • Vicky, please post again and tell us how it goes. Best of luck! :)
    Felsen 510 Replies
    • November 16, 2008
    • 05:41 PM
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  • i will do, and thanks again! vicky
    lynxlynxlynx 8 Replies
    • November 17, 2008
    • 08:37 AM
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  • hii had some blood results back, and one of them is borderline. i cant find a site that can help me to understand them, can anyone help??im wondering if this is hypothyroid!! tsh level 1.53mu/lfsh level 23.2iu/lserem LH 14.3iu/l really desparate to understand now please. vicky
    lynxlynxlynx 8 Replies
    • November 21, 2008
    • 05:14 PM
    • 0
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  • Go to a gynecologist and bring up endometriosis. Endo does really weird things, I have it on my bladder and always have blood protein in my urine.i have a list of symtoms that seem to not neing taken too seriously by any gp.i have blood in my urine now for 4 years. no signs of infection is ever diagnosed, kidney scans were clear, as were x rays.i have very accute, intermittant pain in the lower abdo and in my private parts. i have abdominal swelling all the time now that gets bigger threw out the day. i look pregnant!!my body has changed in appearance now that my breasts are empty and saggy.i have missed 2 periods, but have all the uncomfort associated with my period. i had a possitive menopause home kit, but the doctors blood tests for menopause came back normal.i have heat flushes day and night now. these started getting more noticeable in last 3 months. i am dizzy alot, without obvious reason and some days i just dont wanna get out of bed.im scared that i have cancer!!does anyone else have these problems? i also now have trouble passing urine as the flow is slow please someone else must have a gp that nows what this is! what have they said yours is?? vic
    Anonymous 42789 Replies Flag this Response
  • i just wondered has your GP gone further with this? if not i recomend you travel somewhere different for further information.
    Anonymous 42789 Replies Flag this Response
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