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Told no more asthma

Tomatoman65 profile image
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Hello i was diagnosed with asthma in 2013 after periods of breathing problems. I took clenil daily and through my pf readings they improve when I have taken it, when I wasn't taking and when I'm ill I get a maximum score of 400 but when triggers such as dust and I'm away from work I hit 550 to 600.

I was asked to keep a log of my readings and ventolin usage. Recently the asthma nurse has told me she thinks that I don't have asthma and is going to review with the doctor to see if treatment should be stopped. I have asked that before that I want to be tested in person so my question is -

If they are adamant that i dont have asthma, how can i move on? Should I ask for retest or go to another doctor?

It's exciting to thinking of an asthma free life but I know from regular wheezing and improvement through treatment that I've got asthma. But if they stop all treatment I'm fearful that what if I deteriorate and have an attack what will happen!? It's causing me to become very anxious

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Tomatoman65
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twinkly29 profile image
twinkly29

This is going to sound ridiculous because I know it's not that easy but try not to worry about it because anxiety can very often feel like asthma (but isn't) so that will make you feel worse at the moment.

Tests might help and there's not harm in insisting they're done, but a good result doesn't necessarily mean it's not asthma.

I'm not sure what you mean with your peak flows and taking your inhalers.

Do you take the clenil as prescribed? It might be worth doing your peak flow twice a day every day from now (if you're not already), before your Clenil, so you've got recent data. Also, if you have symptoms and need your ventolin, take your peak flow, use the ventolin and redo peak flow 15 mins afterwards. That data can also be useful.

However, if they do say we don't think it's asthma then I would ask so what DO you think it is and what do we do about it? That might remind them they can't just brush it off and say goodbye (if they were going to).

There are all sorts of conditions that really do look and feel like asthma but aren't and so do not respond properly to asthma medications. No amount of asthma meds will fix something that's not asthma, they need treating in a different way. So getting them to think what it might be instead would be good.

This post explores some of the asthma mimics but they're not the only ones.

healthunlocked.com/asthmauk...

But, for now, try not to worry too much as the doctor may well disagree with the nurse anyway.

BlueBlobs1 profile image
BlueBlobs1

Bit late of a reply so hope things are ok now. I have battled with people not believing I have asthma. If you react to dust with breathing problems then I am not sure there is any other condition that does that other then asthma. You meet the criteria for asthma based on your perk flow reading. I would attack this a informed and methodical stance. Ring asthma uk talk to them. Read as much as possible. Take notes and ask questions that sound logical and that you know what you are talking about. I like phrases like “i am a little confused because according to the NHS guidelines, I qualify for a diagnosis of asthma?” It’s a little confrontational which I like to avoid but best I can think of right now. Ask for any changes of medication or diagnosis to be noted on your records and the reason why. Make them explain themselves. I have been in the situation where I have had to argue my case and won. Sometimes you can have atypical asthma. I for example have MCAS and my asthma presents differently as it’s cause is different but it’s still asthma.

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