Getting a diagnosis

Deep breath

I started coughing back in November, with what seemed to be a cold, which then turned into a chest infection. Antibiotics did nothing but eventually the infection went away, leaving the cough behind. I get tight chested at times too. During the infection I also wheezed from time to time. Cold definitely makes my coughing worse. I feel quite tired all the time and recently started getting a lot of back pain (my osteopath thinks it's related to the coughing).

I've been quite insistent with GPs and back in February I was referred to an asthma nurse. She could see that I was in a fair bit of discomfort and was happy for me to start inhaled steroids straight away. I kept a peak flow diary for 4 weeks and after 4 weeks on the steroids went back to see her. From the results of my peak flow (worse 350, best 430), she felt I was not asthmatic even though the steroids had given me relief. She said to carry on for another two weeks then stop (she didn't see me or ask me to keep a peak flow diary for those last two weeks). She said not to let it go and to see a GP again if it carried on.

I did as I was told and stopped the steroids, after a few days my cough returned, but by then the weather was starting to warm up and and I wasn't coughing quite as much. It did carry on though and I thought I'd go back to the GP and see if I could have some more tests. I came away confused as he was fairly certain that it was indeed, asthma. Mild asthma, but asthma nonetheless. He prescribed me clenil again and told me to only come back for a review in a year, as long as things were ok. Feeling a bit confused I rang up Asthma UK the next day and spoke to one of the nurses who also felt it was asthma. She said I should have been assessed after 6 weeks on steroids, not 4.

After reading up Asthma UK leaflets I realised it would be a good idea to come up with an asthma action plan, which I didn't have, so off back to the asthma nurse I went. She was adamant I didn't have asthma! Arrrgh! I'm so confused. She felt that my cough should have gone two weeks into the steroid treatment, which it hadn't, although it is better and my back pain is also considerably improved. Is this really the case? Two weeks into steroid treatment and your symptoms should be gone? I'm glad she's being thorough, but I feel a bit frustrated and confused. I hope I can at least take the steroids for the full 6 weeks before they tell me to stop (if they do), I'm so fed up!

The nurse said she was going to talk to the GP who diagnosed me and that I should book in to see him in two weeks. I should also carry on with treatment in the meantime, so I'm just waiting now.

I guess I'm writing in the hopes that any of you here have more knowledge or experience in the diagnosis process for asthma and if this is normal. I appreciate many of you probably have worse symptoms - mine are mostly annoying, but I worry that I might have a full blown attack again, particularly when I next get a cold or when the weather turns cold. And it's horrible being in this phase of not-knowing. Thanks for your help.

5 Replies

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  • Inhaled steroids can take a while to fully kick in! So some coughing after 2 weeks (I'd imagine, I don't have any medical training!) wouldn't be surprising.

    I'd have a chat with your GP sooner rather than later about this to save any anxieties.

    An action plan is always a good idea :-) can you print it off and go see your GP with it to help fill it in?

    hope this helps!

  • I was also diagnosed with adult onset after a cold turned into a really nasty, lingering chest infection. It started in October but it was February the next year before I was diagnosed by the hospital specialist. I remember him saying that they were very cautious about diagnosing adult onset so he wanted to be certain. Maybe that's why your doc & nurse are dragging their feet a bit?

    It is confusing & scary but the asthma nurse helpline is invaluable. I found it so helpful and supportive. In fact I've been poorly with my asthma after a recent cold and will have to phone them myself.

    It sounds to me as if you are asthmatic (simply because I've been where you are now and recognise the symptoms) so take the helplines advice and go back. Even if its just to straighten out with your doc what you should be doing & how soon you need to see him again.

    Have you had Spirometry or any other tests yet?

    If not you really should have.

    Feel better soon.

  • Thank you Laura and Cici for your reassuring replies.

    Thought I'd put up a quick update, in case anyone is ever in this position. 4 and a half weeks into treatment with inhaled steroids and I'm almost symptom-free! The cough is much much better. The only thing that bothers me slightly now is a 'tickly chest' sensation, but given how much the cough has improved in the last few days, I think this will eventually go as well.

    Off to see the GP on Wednesday and I'm going to ask (beg!) him to stay on the clenil as it's definitely the only thing that seems to have any effect. I'm not sure if this confirms an asthma diagnosis or not, but it looks like it doesn't it? I'll be sure to post again once I've seen him.

  • Hi

    I seem to be going through something rather similar to you.

    Last winter I was really ill and constantly coughing with chest tightness and aching in the rib area. The doctor was very thorough, did lots of blood tests and an ECG. Once the heart was ruled out, I was sent for an x ray. This came back showing infection in the lungs, which was strange because the doctor couldn't hear anything! However, I was feeling like someone had thoroughly beaten me up!

    I was referred to a specialist who has put me on seretide and respigen. All of this was helping lots until winter hit last week and I also had a nasty cold with another infection. Currently, chest is tight. Pants. (Btw I am living in NZ that's why it's winter now!). X Sue

  • OK, I went back and saw the GP on Wednesday. He agreed with me that the proof is in the pudding and has now double confirmed the diagnosis based on my trial of treatment. As the symptoms haven't completely gone and I said that I felt pollen might be a trigger for me he's advised me to double up seasonally, if I felt the need to. I feel so relieved. I was getting fed up of being passed around and not knowing what was going on. Now I feel I'm getting somewhere and I know what to do. Having said that I'll probably phone up the helpline in a minute to discuss triggers further as I don't really want to double up without being sure if it's seasonal or not.

    Sue - I really feel for you. Sounds like you are having a horrid time of it. Have you seen someone since the cold started? I'm guessing so and I hope you are getting some support. Have to say I feel nervous of getting a cold now too. And having a 5 year old who is forever bringing bugs home doesn't help! I hope you start feeling better really soon.

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