Confused

Morning everyone, went to see a new respiratory nurse last week for my 6 monthly check up. Having been diagnosed with bronchiectasis about 5 years ago,I was surprised when he said it was a misdiagnosis, my test results have improved and seem to be normal for my age,height,sex etc. I now have a diagnosis of late onset asthma....he advised me to come off simbacourt,which I did and to just use blue inhaler when needed, but I definitely need to take simbacourt twice a day,as I became a bit breathless again.It would be great to believe I haven't got COPD but I'm not convinced....any thoughts ???Barbara .

13 Replies

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  • Bronchiiectasis and COPD are two different lung conditions , you may actually have COPD but you need proper diagnosis.

  • Thay don't always get it right ,I'd ask to be referred just to doubles check,' would Defo be nice if u don't have it tho xx

  • Get checked out and hopefully get a definitive diagnosis. Good luck to you and fingers crossed. Xxxx

  • Hi Barbara, Well, there seems to be a lot of confusion here. First of all bronchiectasis is a separate condition to those which come under the COPD umberella, which are chronic bronchitis and emphysema. Was your bronchiectasis diagnosed by ct scan by a consultant? This is the only way in which it can be confirmed. If it was there is no way that a respiratory nurse could decide that you have had a mis diagnosis. In my experience most respiratory nurses do not know much about bronchiectasis at all. They are only trained in the management of COPD. I suggest that you tell your GP that you want a referral to a good chest consultant so that you can get a proper diagnosis. Then you can get the correct treatment and advice for managing whichever condition you do have. Don't take no for an answer. Good luck.

  • Hallo Barbara. I can't add to what SS63 says. I was diagnosed with COPD four years ago, but the resp.nurse said I only had asthma. Having had mild asthma some years before, this had been quite different from what I was now experiencing. I checked with my GP who had the X-ray, and presumably the radiologists's report and she confirmed it was definitely COPD.

    You need to know definitely what you have to set your mind at rest

  • Hi. Who gave you the first diagnosis? Was it done from a scan? Is a nurse qualified to override a diagnosis? I have just seen Stillstandings response, I guess I am saying the same things. I was diagnosed with emphysema at the surgery but diagnosis changed to Bronchiectasis by the consultant following a scan. It's important to get the right diagnosis si I would ask for a referral. Good luck.

  • Thanks everyone, I was diagnosed with suspected bronch,no scan, ...I don't have any phlegm or coughing. Think you are right about seeing my GP .....

  • Suspected - how daft. As far as I know you need a CT scan to confirm a diagnosis of bronchi - I don't know how they can diagnose you without it. I agree with the others to seek a firm diagnosis with a consultant. Let us know how you get on. x

  • Hello Barbara I understand your concerns and I've just seen other replies so I will reinforce it all !

    With the greatest of respect to respiratory nurses ....they are nurses ....you need to see a specialist !!! It's your right to insist on seeing a specialist. I now monitor myself and then see a specialist if I need to. By pass the nurses completely - they are taught how to pigeon hole everyone and everyone's lungs/bodies/physical responses are different.

    The sooner the medical profession accept this and are pro active for us rather than re active towards us the better all of us, as individuals, will be

    That's the rant over !!!😏

    To the best of my knowledge the diagnosis of bronchiectasis cant be reversed , and certainly not by a Nurse !!! When then would Respiratory Specialists need to spend years at Medical school and then elect to SPECIALISE in ALL lung conditions!

    GPs wouldn't carelessly diagnose or reverse diagnose a condition like Bronchiectasis ....Asthma and COPD yes.

    Also, very importantly, have you been previously diagnosed with COPD ? It's not to be confused with Bronchiectasis ! Remember too, Asthma late onset or otherwise is an autoimmune response in your body and is therefore an autoimmune disease but COPD and bronchiectasis are aquired lung diseases.

    I have brittle asthma (for 40 years) unfortunately leading to the developement of Bronchiectasis. This isn't usual, I've just been unlucky and I've had bad medical management for decades. I believe now I have to manage my condition myself and then follow up with a (carefully chosen) medical specialist when needed.

    It's just one condition - I have many others to manage too.

    I'm not a bit surprised you left the surgery feeling confused - it's wrong to stop your preventative inhaler until you've done a series of tests with your mini spirometer (I'd like to think you've been given one for home monitoring and if not why not, they're not at all expensive)

    I'm sure you know it's causing your lungs more damage and scarring to be left struggling for breath ! Your poor lungs !

    Go back to your Doctor and say - given the 'reversal' of a diagnosis (by a Nurse!!!) you should be seen by a specialist respiratory Consultant to allay your fears and to put you on the right management of care !

    Good luck and keep well - meanwhile don't over exert yourself and try some relaxation exercises to help your breathing.

    Susan 🙂

    Ps very importantly, has anyone done sputum tests - ask for this too as a diagnosis of (or reversal of) Bronchiectasis can't be done without it.

  • Hi, can't add anything useful but to remind you that healthcare people are only "practicing" hope they get it right and can help you. Good luck,

    Bruce

  • Hi Barbara. I was diagnosed with mild asthma about 5 years ago and I was never convinced it was what I had. Scanned a few weeks ago and they're saying Bronchiectasis. I have been given Azithromicin 250 as a trial until January Had another bad chest infection last week Did you find anything helped to keep things at bay ??

  • I can onlyou agree to what has been said. A CT scan is essential for bronchiectasis! Have you had a scan? Bronchiectasis is not reversible and it shows up very clearly on a scan. Again, COPD might be an umbrela term but Bronchiectasis is not COPD. I used to be called to the COPD clinic every year until a new Practice Nurse arrived who knew a little more than most! If you have not had a scan you must insist on one. You need the correct treatment.

  • Bronchiectasis would show up on a bronchogram, copd is when your lung function is irreversible. If by using your inhalers you can calm the asthma and your lung function is normal, you don't have copd. Good news???? !

    Banksy70

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