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Misdiagnosis?

Grasso97 profile image
7 Replies

Hi there, I have been a member of the group for about 18 months,and find it very helpful.

I was diagnosed with bronchiectasis in 2007, but don't seem to have the symptoms described by many others on this site...I have no cough,also very little phlegm,which I thought was one of the main symptoms. I smoked for many years,gave up 8 years ago so I know I have something going on with my lungs,just wondering if they may have got it wrong. I was diagnosed after a standard chest X-ray. I have two inhalers,one preventer ,one reliever, I see the asthma nurse every 6 months.she seems satisfied that I'm not getting any worse. I can blow 380 - 400 on peak flow device, I am 63 and fairly active.would be greatful for your opinions .Barbara

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Grasso97
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Pentreath profile image
PentreathVolunteer

Hi Barbara

My understanding is that bronchiectasis cannot be diagnosed from an X Ray, but a high resolution CT scan. That is what happened when I was diagnosed - although the consultant said she thought that would be the outcome before it was done. As you say, you do not have the typical bronch symptoms and are 'blowing well' it may that it is asthma and could be worth asking if a recheck could be done. Asthma has a very typical result from the spirometry tests - have you had those done?

Good luck with getting the information you need and please let us know how you get on.

O2Trees profile image
O2Trees

Hi Barbara, from my limited knowledge I agree with Pentreath.

Im almost 70 and I was dxd with bronchiectasis 6 months ago after a heavy bout of pneumonia. This was done via a CT scan, which as Pentreath says, is the usual way its discovered. I was shown my scan results on the monitor by my consultant and he explained that bronch causes a widening of the airways so that they are parallel, rather than tapering as they are meant to. Im not sure how that would show on an X-ray but i don't know enough to say.

What i can say, as a fully dxd bronch, is that I also have very little mucus in my lungs. The consultant showed me where some had pooled in the widened airway in my lower lobe. I seldom have any crackles when they listen to my lungs now though, and can't bring any mucus up when i do the physio. I can breathe out to near the bottom of my lungs without any wheezing or coughing. The only cough and mucus i bring up comes from my throat, probably caused by reflux as this is a common symptom of that.

If I were you I would want more information, and to see the X-ray and the X-ray report, get a spirometry test as suggested, then if you can't get a satisfactory answer, ask to see a consultant, or get a second opinion. Good luck :)

Offcut profile image
Offcut

Spirometry test is by far the best, most GP practices can do them but the best is in the plastic box in the hospital.

I had one at the GP's in 2008 which confirmed RLD. I was then sent to have one at hospital which was very thorough. I had one in the box sitting and one on my back in a bed. I am 12% lower reading flat. They confirmed RLD and PH suspect Fibrosis which has now been confirmed and acknowledged by my GP's.

Good luck

Mandy6513 profile image
Mandy6513

My diagnosis of bronchiectasis was made after a ct scan but at a hospital appointment i got to see my xrays and they showed me where the bronchiectasis was and how it could be seen on some xrays but not on the older ones

Im assuming it does show if its reached a certain stage

As far as symptoms go i get days where i dont cough once and feel almost normal then the next day can bee in a right state

cofdrop-UK profile image
cofdrop-UK

hi Barbara

Why are you being monitored by the asthma nurse for bronchiectasis?

Although it is less common some people do have dry bronchiectasis.

If I were you hun I would be asking to be referred for a ct scan - that is the most accurate way to diagnose bronch. If it comes back positive then I would also ask to be referred to a respiratory consultant with a special interest in cf/bronchiectasis. You really have to be your own advocate to make sure you get the dx and treatment you deserve.

Good luck.

love cx

I think that cofdrop is spot on with self-advocacy as a general principle in health matters. If you show the relevant specialists that you are alert about your condition then both patient and professional benefits.

Grasso97 profile image
Grasso97

Thank you all for taking the time to answer my post....seems it's back to the drawing board for me.

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