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Wrong diagnosis

Discussion in 'Respiratory' started by sunanda, May 31, 2010.

  1. sunanda

    sunanda New Member

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    Well, how about that....8 years ago I was diagnosed with a progressive lung disease called pulmonary fibrosis (at the time it was known as fibrosing alveolitis but it changed its name.) I was told that it was a progressive disease (online I read that 50% of those diagnosed die within five years of diagnosis) and that I would probably need oxygen at home at some point. I was offered very high doses of steroids which I would have to take for the rest of my life.
    I declined the steroids and came to terms with the possibility of a shorter life than I'd envisaged. I saw the situation as a way to walk my talk since I don't believe in death as the end...
    Well, since then I have been having an annual check up to see if the condition has got worse and I'm happy to say that it hasn't. However, this year I asked to go to a hospital nearer to my home (I moved 3 or so years ago) and was referred to University College Hospital in London. A few weeks ago I had my appointment with a really lovely young woman doctor who specialises in this kind of lung problem and lo and behold, it turns out that I was misdiagnosed. Apparently what I have is something called systemic sclerosis sine scleroderma. My symptoms are the same but the prognosis is that it won't actually kill me and it won't get any worse than it is now. How about that? Just goes to show that doctors are not omniscient and that possibly we should question whether or not to take the medication they prescribe for us. (Though of course that is an individual choice - I'm not saying everyone should stop taking their pills!!!) But isn't it lucky that I didn't fall into a state of despair when I was first diagnosed.
    xxx
     
  2. Celtia

    Celtia Active Member

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    Oh Sunanda - I don't know whether to feel joyful for you that your are in so much better health than you thought, or angry about your initial misdiagnosis!!

    It is just as well you are the wise optimist that you are and I am sure that feeling joyful is the best option. But I am not sure I would have taken such a sanguine approach if I had received that news 8 years ago and I admire your courage and ability to walk your talk.

    How wonderful you must be feeling now. Wishing you continued health.
     
  3. coerdelion

    coerdelion New Member

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    Dear Sunanda

    So happy for you... it takes a great deal of courage to live as you have all these years.

    Great to have such good news - thank you for sharing it

    Fx
     
  4. CarolineN

    CarolineN New Member

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    Hi Sunanda

    What can one say? Thank goodness you didn't accept the corticosteroids! and yes, a second opinion is almost imperative in a diagnosis with serious connotations. So enjoy the rest of your life!

    Love and Light
     
  5. sunanda

    sunanda New Member

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    Hang on a sec! My symptoms are the same, my lung function is still impaired. Nothing has changed except that my condition has a different name. And the official view is that I now won't die gasping for breath (as my GP once told me when he heard of my refusal to take steroids!) I never spent much time thinking about it anyway. And I certainly don't see anything brave in living with something that you can't do anything about (except pray, I know.) There are a lot of people, an awful lot of people, living with far far worse things than this. My point is that people really shouldn't have blind faith in conventional medicine. But thanks for your nice comments!
    xxx
     
  6. kvdp

    kvdp New Member

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    When somebody recovers from an 'incurable' illness this is always put down to wrong diagnosis.

    Bear in mind there isn't a disease known that somebody hasn't recovered from. I have colleagues who have managed to turn various confirmed diseases into a 'wrong diagnosis', yet no medic has ever asked to learn how this has been done, which is quite sad really. You'd have thought your doctors would want to know if there is anything they could learn from your case about helping other PF sufferers, but ten quid says they don't.

    But very well done!
     
  7. sunanda

    sunanda New Member

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    Hi kvdp
    Please read my posts again. I haven't 'recovered' from anything. I still have the same symptoms; in fact other factors now all tie in too but I won't bore anyone by listing them. Basically all that has changed is the name the doctors give my condition. My point has been all along that it's lucky that I didn't get totally depressed by the first diagnosis. Nothing in my case could in any way help other PF sufferers. And I have never considered myself to be a 'sufferer' anyway. I do not buy into the idea of 'suffering from a condition'. I am not a victim but a perfect child of God.
    xxx
     
  8. kvdp

    kvdp New Member

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    Hi, I don't subscribe to the labels either, far be it from me to land you with one! My view is that there are no diseases, our symptoms arise largely from healing processes, the medical classification of disease does not follow a rational system and usually fails to help. Diagnosis is itself a hugely unreliable process, it leaves people high and dry as often as it actually helps. Medication causes more problems in the long run because you can't poison your body back to health.

    So your symptoms are unchanged, yes, and my point is that you have defied the original prognosis having refused the recommended treatment, and a game of semantics is supposed to explain it. This speaks volumes to me, sorry if I have caused offence.
     
    #8 kvdp, Jun 1, 2010
    Last edited by a moderator: Jun 1, 2010
  9. sunanda

    sunanda New Member

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    No offence at all, kvdp, I just wasn't sure that you had got the gist of what I was posting.
    xxx
     
  10. coerdelion

    coerdelion New Member

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    Sunanda, I think what we're all saying is that we're glad you'll be with us for some time to come :)

    Fx
     
  11. New Age London

    New Age London New Member

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    Wow Sunanda. It's a good job that you are such a forward-thinking positive person. If that diagnosis had happened to someone with different beliefs and a different outlook, the outcome may have been different.
     
  12. sunanda

    sunanda New Member

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    Yep, that's what I was thinking Suzanne. But then, to my way of thinking, everything happens for a reason.
    Fiona, that's a really nice thing to say. Thank you.
    xxx
     

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