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Thread: Breathlessness

  1. #1
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    Default Breathlessness

    Hi
    Sorry I haven't posted for ages, been really busy.

    As far as I know, for the past few months i've been ANCA negative, but i've been getting so breathless with a dry cough which makes me gasp for breath.

    I went to hospital last week, and my CRP and ESR were around 100, but as my oxygen levels were ok, they put it down to a virus.

    I'm still feeling really weak, tired, and breathless. I wondered if I had asthma or something, but I don't have a wheeze, and when I try ventolin it seems to irritate my lungs and i have coughing fits.

    I give up going to the GP, and rheumatology aren't seeing me until next week.

    I wish I could take my own bloods, and look at the resuts myself. I don't trust anyone else!!!

    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

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    After a few months of problems, I think you should be asking for a referral to a lung specialist.
    After many years in remission, I developed a cough which turned out to be Bronchiectasis. Oh joy! I went through quite a few different inhalers before finding a couple that had any effect at all. It is now one of my more serious problems and I wish I had been able to catch it earlier.

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    Thank you for your reply. Whenever I see a doctor, the listen to my lungs and tell me it sounds clear...but why do I struggle so much then? My tracheal stenosis is fine at the moment, so i know it's not that.

    Will keep you updated...thanks
    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

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    hi gwenllian.
    in september of last year i had surgery,not wg related.before that i was feeling pretty good wg wise.since the op i have experienced the same symptoms as yourself.as with you lungs are clear CRP, was 30 which is up a little but not much.my rheumy has referred me to cardio and respiritary for further investigation.will keep you posted.
    john

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    Gwenllian, when my lungs were full of hemorrhaging blood, and even when they were full of blood clots, they always sounded clear. I couldn't breathe and my docs then told me (of course!!) I was crazy. Also, my oxygen levels always measured fine, but I was clearly cyanotic. Each time it persisted, they'd finally order a chest CT and discover what was really wrong.

    When's the last time you had a chest CT? Your inflammatory markers are high--that's not a virus. The ANCA is not necessarily a reliable predictor. You could be flaring. I hope you see your rheumy quickly this week.

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    I'll just add my name to the clear sounding lungs list!

    I have a lung infection at the moment (coughing up lots of green stuff! Yuk!), but my lungs sounded clear when I went to my GP for a different antibiotic. Luckily, he always believes what I tell him.

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    thank you so much for your replies, you make me feel as though i'm not going crazy! I feel like such a hypochondriac sometimes

    I haven't had a chest CT for years. During my first ever flare up of WG, I had a terrible dry cough and I just couldn't breathe. Eventually, my lungs started bleeding / collapsing, and I was intubated in intensive care in weeks while the doctors tried to get me back into remission.

    I have had a lot of chest x rays over the years, but not recently, especially now that i'm pregnant. That' the other thing, doctors know i'm pregnant and put it down to that - which is a possibility i know, but im only a few months, and i've been complaining of breathlessness even before getting pregnant.

    Anyway, sorry for the rant, but thank you so much for your replies. I'm glad that a clear chest doesn't neccesarily rule out any problem.

    I am seeing Rheum next Friday, hoping to get some answers/reassurance then.

    PS. good luck John, hope things work out ok for you.
    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

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    If you were intubated you could have tracheal stenosis. The sooner you you have a PCT test the better and the sooner you see your Rhuemy the better. Good luck! I'll be thinking about you as I know exactly what it is like to not be able to breathe. Thank goodness! I had doctors that jumped on helping me right away ( I was the procrastinator in getting thehelp to begin with....but never again)

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    Hi
    I do have a tracheal stenosis, it was mis diagnosed as asthma for over 7 years! I asked my consultant (at that time), if I could have TS, and he told me categorically no, and thought I was a complete hypochondriac!! By the time I became pregnant in 2004, I had a 70% blockage in my trachea and had to have emergency surgery.

    My TS is actually a lot better at the moment, it's definately a lung thing (as far as I can tell), but i'm seeing ENT this week for a check up anyway x
    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

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    OMG! 7 years of misdiagnosis! I am so sorry. Best of luck with your breathing situation now. I am thinking about you
    Lisa Coffeelover

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