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    Old 12-07-2006, 12:29 PM   #1
    pinkmada
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    Exclamation no one knows whats wrong with me

    Up until June this year i have been perfectly healthy, i have never smoke or taken illegal drugs and i drink very occasioanlly but haven't since all this started.
    ok, so back in june I got my first bladder infection, was given a course of antibiotics and it cleared up. Couple of weeks later, the same thing happened, after my third bladder infection my gp treated me for a kidney infection but this time it didn't go away, I was in severe pain, predominantly on my right lower side but occasionally it moved round to my back and to my left side. Whenever it moved to my left side the pain was (and is) about 100times worse than on my right.

    By August my GP had no idea what was wrong with me, I ended up signed off from work because i was in so much pain, my many blood tests were apparently fine but my urine tests were coming back high in blood and protein. My GP admitted me to hospital where they kept me in for a week, they ran numerous tests, i had an ultrasound which was normal, a CT scan that was normal and a lower endoscopy which was also normal. I had 2 xrays of my chest and abdomin which again were both normal and lots of smears and swabs form gynae that were normal. Again my blood tests were fine and my urine tests were still showing excessive amounts of blood and protein. I was discharged with a bag full of painkillers and told they didn't know what was worng.

    My GP then referred me to a speacialist who in about three hours diagnosed me with Pelvic Inflammatory Disease, I was given another course of antibiotics for a month and told to go back and see my GP. About two weeks into the antibiotis i was starting to feel better and i thought they had finally got to the bottom of it and i would be fine. Then i started throwing up blood, I got rushed to hospital and had an upper endoscopy which showed that my stomach had pushed up into my diaphram. I was told to stop taking my ibuprofen and diclofenac and was prescribed tramadol and dihydracodiene. About a week after the end of my course of antibiotics i started getting the smae pain as before but it seemed to have spread and was under the bottom of my right ribcage and it was extremely painfull to breathe deeply and i occasionally woke up not being able to catch my breath. I was also having hot and cold sweats. I was given the same course of antibiotics for another six weeks but this time it made no difference.

    I then changed my GP after she told me she didn't know what else to do. My new GP ran every lood test he could think of and told me that while there was still blood and protein in my urine, there was very low counts of protein in my blood which indicates a kidney infection. He also said that my white blood cell count and my ESR(?) count are both very high. He made me an appoinment at the outpatients clinic at the hospital and i went to see another doctor. I was then given another ultrasound and this one showed 'multiple abnormalities and cysts on my spleen'. I saw this docotor at the hospital again a few days ago who said that he would book me in for another CT scan but that it would probably be 'a red herring' and he 'doesn't know what to do with me'.

    My GP told me before my ultrasound that if the hospital don't do anything to fix me then he'll admit me again. Surely if they found cysts and abnormalities then they would want to remove them or something? I think that this is just a new thing otherwise the CT scan and ultrasound that i had in August would have shown them the cysts. I don't know, I just want it to go away. I don't think i'll cope with someone else telling me they don't know what to do.

    Sorry it was so long. x

     
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    Old 12-07-2006, 01:03 PM   #2
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    Re: no one knows whats wrong with me

    Did they check for kidney stones?

     
    Old 12-07-2006, 01:10 PM   #3
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    Re: no one knows whats wrong with me

    I presume so. Wouldn't it have shown on the ultrasound or CT scan?

     
    Old 12-07-2006, 01:33 PM   #4
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    Re: no one knows whats wrong with me

    They usually perform an IVP and that is when the shoot dye into your veins and do xrays. I'm not sure about the cat scan or ultrasound picking up stones. Sometimes they are so tiny you wonder how a little thing like that could hurt so much. Good luck

     
    Old 12-07-2006, 02:58 PM   #5
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    Re: no one knows whats wrong with me

    Pink mada,

    What kind of specialist were you sent to? And did you return when the pain returned? The problem with specialists is that often they only know about the body system they specialize in -- and perhaps you need to see a different kind of specialist.

    Also -- there is a book called: What's Wrong With Me? The Frustrated Patient's Guide to Getting an Accurate Diagnosis -- and I understand that it's been very helpful for people in the position you're in. You might think about getting ahold of it.

    Good luck to you -- keep us posted.

     
    Old 12-07-2006, 04:25 PM   #6
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    Re: no one knows whats wrong with me

    i think it was a gastro intestinal specialist. my GP says i was misdiagnoses. I just don't understand why they aren't doing anything about the cysts.

    Last edited by pinkmada; 12-07-2006 at 04:27 PM.

     
    Old 12-08-2006, 04:37 PM   #7
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    Re: no one knows whats wrong with me

    When you had blood tests run in the beginning, was your white blood count normal then? Have you seen a Urologist? I have kidney stones and by what you describe, it sounds like you may have passed them and then developed them again or something. I would definately see a Urologist though. Keep us posted!

     
    Old 12-09-2006, 08:39 AM   #8
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    Re: no one knows whats wrong with me

    Pinkmada,

    These other folks are right -- you need to be referred to a urologist. Ask your GP to refer you and take copies of your test results.

    If your GP thinks you were misdiagnosed, then why aren't they looking into it further to find out what the real diagnosis is? I hear your frustration loud and clear -- and the very BEST thing you are doing is listening to your own intuition in pursuing an answer.

    I was misdiagnosed, too. I was told I had cancer and I would be dead within 6 months if I didn't begin chemo! I trusted my intuition and figured out on my own that I didn't have cancer. I got my test results, and looked up all the words I didn't understand, and eventually proved that I had been misdiagnosed. It happens everyday and people get sicker because they don't advocate for themselves.

    So keep trusting your intuition -- and stay on top of your GP until s/he sends you to a urologist to review all your tests and symptoms.

    Good luck to you.

     
    Old 12-12-2006, 03:49 PM   #9
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    Re: no one knows whats wrong with me

    also forgot to say that while i was in hospital in august i started bleeding from the back passage when i went to the toilet but there was only ever blood on the paper, it was a little but more than spotting. I was told that i was constipated and given laxatives which made no difference as i wasn't eating properly and i was going to the toilet regularly every day and it didnt hurt and i wasnt straining. After a couple of months it eased up and it was very light spotting but the last 6weeks it was been the same as it was before and then yesterday (which is why i remembered i hadnt posted it) when i went to the toilet the paper was soaked through with bright red blood and wheni looked down the toilet all i could see was blood, it looked really thick, once i'd wiped all the blood away there was this clear slimey gel stuff on the paper as well that ive not seen before.

    I've told my GP and the doctors at the hospital a couple of times about this and they all just tell me that im constipated, ive argued that im not but no-one seems to listen to me and now im freaking out about the amount of blood yesterday. I can't help but wonder that this is the cause of all my pain but then i became ill in june and i didnt start bleeding til Auagust?
    Sorry, im ranting again. I'm seeing my GP on thursday again so i'll tell him.

     
    Old 12-14-2006, 03:46 PM   #10
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    Re: no one knows whats wrong with me

    Went to my doctors today, i have a CT scan a week tomorrow but he's not happy with what the doctor said at the hospital. He also prescribed me with amitriptyline as a slow releasing sedative so i can get a good nights sleep. I'm so fed up with this.

     
    Old 12-17-2006, 12:16 PM   #11
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    Re: no one knows whats wrong with me

    i feel really dizzy, like im going to pass out. I'm not sure if it's the new drugs or that i haven't eaten for 3days (i've tried but it feels like i'll throw up when i swalllow) or a combination of both. I've been excessively thirsty for the past two days also, again could just be because i haven't eaten.

     
    Old 12-17-2006, 02:46 PM   #12
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    Re: no one knows whats wrong with me

    Quote:
    Originally Posted by pinkmada
    i feel really dizzy, like im going to pass out. I'm not sure if it's the new drugs or that i haven't eaten for 3days (i've tried but it feels like i'll throw up when i swalllow) or a combination of both. I've been excessively thirsty for the past two days also, again could just be because i haven't eaten.
    Hi Pink. I'm from UK too and in my opinion GPs and NHS are no better than useless. If they can't find anything wrong its always pain killers or they put it down to stress.

    You're having obvious symptoms. Hell all the GP and NHS Drs need to do is look at your test results, CT Scans and blood and know that something is obviously going on with you.

    In regard to what you said above - you need to drink fluid NOW. It sounds like you're dehydrated. Are you still passing lots of blood from your anus? If you are go straight to Hospital now. Ring for ambulance and admit yourself. They'll do investigations and you'll be referred to a gastroentologist who specalises in this area and they will sort you out hun.

    With kidney stones this would of showed up on your CT Scan in most cases but tiny ones only show up with injectable dye. When you see your specalist next tell them you want the cysts' removed pronto. Put your foot down with them and make them do something or threaten them with the GMC. Usually does the trick.

    Definitely go to Hospital now if you're still bleeding. A sticky substance in your bowel motion is usually a infection, hemarroids etc. It can be numberous things hun but this is not due to constipation.

    Let us know how you get on. x

     
    Old 12-17-2006, 08:37 PM   #13
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    Re: no one knows whats wrong with me

    What about a functional hiatel hernia? Sounds like all the symptoms - chiropractors can help -

    Good Luck

     
    Old 12-19-2006, 08:00 AM   #14
    pinkmada
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    Re: no one knows whats wrong with me

    Quote:
    Originally Posted by _mystictiger_
    Put your foot down with them and make them do something or threaten them with the GMC.
    Whats the GMC?

     
    Old 12-21-2006, 04:33 PM   #15
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    Re: no one knows whats wrong with me

    Ended up in A+E two nights ago, i woke up in agony, i couldnt move and i was crying cause i was in so much pain. My flatmates boyfriend managed to drive me to hospital where they monitered my heart rate for an hour and a half and then sent me home. I don't know what to do. They did nothing, literally nothing. I just want to cry, all the time I feel like crying and I'm never usually like that.

     
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