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Thread: Now I'm getting angry

  1. #1
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    Default Now I'm getting angry

    Just had my six monthly tests and appointment with my specialists and I walked out feeling like it's all in my mind.

    This idiot doctor tells me all my blood and urine tests are normal and my X-rays show no signs of infection. He asked me who diagnosed me and how was the diagnosis confirmed. All this information is documented in my files and he obviously couldn't be bothered to check.
    I said angrily that they did a biopsy on the pseudo tumour behind my eye that was progressively sending me blind.

    After nearly 5 years of living hell with this disease and this quack was trying to throw doubt on my diagnosis. What a waste of time.

    I complained to him about the infection in my sinus. About the great chunks of green and yellow coloured scab material I have to blow from my nose constantly. His comment was I have no infection and smoking does that.

    I told him the night sweats have returned and my eyes are so sore. I asked him if something might be done about my hearing which has noticeably and recently got worse. I told him my taste and smell is gone. He has ignored all this.

    I recently tested positive to an FOBT test showing I have blood in my stools. I'm having no luck in getting a colonoscopy. I asked him if he could fast track this as I've read WG can cause bleeding from that area. He said that's rubbish. That WG doesn't cause bleeding from the bowel. Again he did nothing.

    In the last week I'm noticing a lump growing rapidly on the side of one nostril. I had this happen when my disease was active.

    Im getting to to the point where I'm giving up on the medical system. I think to myself that it's probably better I cut ties with these idiots that I think might think I'm a hypochondriac. Just let the disease go for it and deal with the consequences then.

  2. #2
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    PJ,
    I am sorry that you are having to deal with poor healthcare for such a serious illness. I have also been dismissed by a specialist, when I know that issues really need addressed. You need to get to another facility and get some immediate help or go straight to the administration about this doc. We know our bodies better than anyone and have had many bad situations to deal with, it is hard to believe that doc's would just pay you no mind. Please go seek help elsewhere, you have come to far to give up now. Best wishes to receiving the care you deserve.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  3. #3
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    Do not give up, consequences are too great. I would find another Dr. I have been told that kidney or lung biopsy is the best but those organs have to be involved for them to work. My husband and daughter thought I was crazy when I had those "green chunks" in my nose. So glad you mentioned it and now I know I wasn't. They did go away after I was diagnosed and treated. I did have very minor kidney involvement that I didn't even know about it and had the biopsy done on that. Have you had a full set of blood work done? I would guess yes but I know my creatinine level and a little blood in urine is what gave it away. Stuff you can't see but is there. I see a kidney specialist for treating my wegeners and he really knows his stuff. I also had problems with my eyes, red, watery, itching, scratchy. Turned out to be side effect or the prednisone and now a lot better once cut down my dose. Most all of my problems have turned out to prednisone side effects. Not sure about all the stuff you have done so far, but don't give up. Find someone who knows about this disease and go to them. Good luck!!

  4. #4
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    So sorry to hear that. Its awful if you can't trust your docs. Is your PR3 level low, and was it low or negative when you were diagnosed? Mine was never really high, and the rheumy I last talked too said it wasn't all that reliable in measuring my disease activity, but I guess for many people it will give away if a flare is going on.

    I actually had the opposite happen to me. I was diagnosed last summer, but I only had Wegs in my nose and I guess if you look at the strictest requirements for diagnosing Wegs I wouldn't have met them as I guess the nasal biopsy wasn't conclusive. So was hoping maybe I really didn't have Wegs when I was feeling so well 8 months later. Well now it attacked me in the kidney, lungs and throat and the kidney biopsy proved wegs so at least I'm not uncertain anymore. Sigh.

    But please push for another doctor instead of just waiting for it to get worse.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  5. #5
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    Thanks you guys,

    I don't quite understand all the figures. Two weeks ago a dr said my ANCA levels were 200 in the positive and that that's what they measured when the disease was at its worst 4 odd years ago.

    The new results Anti-Myeloperoxidase AB (MPO-ANCA by Bioplex): 5.1 A1 (normal less than 1).
    The PR3 ANCA showed a negative result.

    All I know is that my diagnosis was a result of five days in hospital with intense and intrusive testing at the peak of the inflammation. The biopsy sample was from inflamed tissue behind my right eye. They made an incision in my top eyelid and somehow got behind the eyeball.

    I have since put in a complaint to the hospital. I rarely feel like I'm being treated in a correct manner. They gave me a copy of all the tests done. Everything looks ok as far as I can ascertain. Even though the tests show things to be ok why is it that I feel like I do? They say this disease is always active and it continues to go through its course.

    In other words, regardless of these tests the disease progresses continually to its eventual destructive outcome. Is that true?

    Reading through some of the scientific publications I saw where upon the death of some WG that something like 30 percent of sufferers showed significant heart disease caused by WG. They didn't die from that but eventually it would have taken its toll.

    Can anyone clarify this? Does this disease stay on course and slowly keep on damaging our bodies?

    Sorry if I sound morbid but these are the kinds of questions no one seems to answer.

  6. #6
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    I'm not sure I can dispute the theory of the disease always eating away at us, BUT the disease can be controlled, is controlled more than adequately for most peeps if they get the correct help in time...that's a huge issue. I don't know what your options are, but I'd fire those docs just for alluding to our mortality in such a way to you. There are many instances on here of people who have borne children, lived into their 80s...and so on. Those docs are wrong and have no right to frighten you like that. Keep us informed.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  7. #7
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    I've received a response to my complaint from the hospital re my concerns regarding the management of disease.

    The Clinical Director of Internal Medicine has reviewed my concerns and acknowledges that this has been a very distressing experience for me and has apologised that I found Doctors responses and lack of continuity disappointing.

    It was stated ' In order to provide consistency in care we have flagged within your medical record that future management should be done by the Senior Consultants when available. '

    I hope this will be the answer to better treatment. Unfortunately, even some of the Senior Consultants have been less than professional in their approach to me and my disease.

    The Doctors I'm seeing are actually kidney specialists. The last dr I saw, after I told him of my health concerns said ' at least your kidneys are ok'.

  8. #8
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    PJ, I am also sorry you are going through all this crap with your drs.,especially when you are not feeling well. There are alot of Aussies on this site ,I am sure some will chime in and maybe steer you in the right direction to get proper medical help. I understand there is also a facebook page for Aussies you might want to look at. Best of luck to you in getting the proper care and in a timely manner.
    Life isn't about how you survive the storm, but how to dance in the rain !

  9. #9
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    Is one C - anca and the other P-anca?

  10. #10
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    Barb, I don't know. What I wrote was exactly what was on my copy. Very confusing.

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