Despairing as keep being told ' it's not typical asthma' so won't officially diagnose

Hi,

I wrote a post on here the other day, long story short.... ? Asthma since March this year following bronchitis episodes.

Ever since started having ' attacks' I keep being told that it's asthma, but isn't' as my symptoms aren't text book.

When I was admitted to hospital following 2 acute attacks, they finally heard wheezing and crackles....was so happy I almost kissed the doctor!

However my specialist STILL won't say ' yes, its asthma....without adding.... but your not behaving typically asthmatic'

I despair now. She wants me to do asthma challenge test before my next lung function test to make sure ' we're not barking up the wrong tree'

Which I understand, but I don't.

I Ve had 8 months of this, haven't been able to work for last 3 months which is causing financial stress now.

No one will tell me why I'm not being typically asthmatic tho , so if I describe on here I was hoping people can tell me if sounds right or not?

I do have a chronic cough btw, which started at the same time, and I've always found it Harder to inhale.

'Attacks' can be slow building over hours or days. Or sometimes no warning, just bang

Feel tightness in chest, sometimes gripping type pain. Inhalers won't clear it completely so use nebs ( ventolin and atrovent work the best)

Feels like a wave.....becomes so intense, then slowly ebbs away. Can usually feel the sudden relaxation of chest.

I try to do small shallow breaths like they say, but of course it's a struggle most of the time.

I've become increasingly mucousy in last month, last nights attack made me feel like I was under water during attack. I cough abit ( chesty wheezy) and tend to sit with my shoulders back during it,

My X-rays are clear, nodule and ground glass opacities on ct scan. Blood work ok. Allergic to rye glass, dogs/cats ( had skin prick test) lung function showed lower end normal for spirometry, carbon monoxide gas transfer reduced to 63%. Also noted was eactatic ascending aorta. ENT gave all clear on endoscope.

I take seretide 250mg bd, ventolin, atrovent via spacers or inhalers. And pantoprazole.

Specialist ruled out copd.

She, and GP, say my asthma isn't controlled at all....which why suspecting other factors at play, or if ' just' asthma. Seretide is my life line since this all happened as helped with fatique I was getting ( which I still get at times tho)

I feel like I've spent months of ' is it or isn't it' .... finally in hospital they said it was ( although something else also going on) but I felt so relieved to finally get diagnoses, now I feel back to square one.

Having never had asthma before ( I'm 48) I don't know what it is that I'm doing / not doing for them to be saying this all the time!

22 Replies

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  • The only advice I can give is to phone the help line sorry I cannot help more. Gentle hugs on their way

  • Hi like I said on your other post you need to get more advice and help on your symptoms. You will get this in the BLF site which is for all people with lung problems whether diagnosed or not. x

  • I do feel people have forgotten what asthma is and how it behaves and how erratic it is as well. I don't think they have a machine to look at every aspect of the lungs. Most results are symptomatic as well, meaning if you have the symptoms then you should be given drugs to help them. If the drugs are helping, then you should be diagnosed with something.

    That's the problem now thought. They kind of expect certain things with certain behaviours and if they aren't there then you can't be diagnosed. I am not sure who that helps because if you are ill, or not functioning effectively then there should be a diagnosis there.

    Take for instance the time before spirometers or other machines they use now. If you had a chest tightness and was breathless, it was asthma and you were medicated. Now all this expensive machinery pops up they rely on it other than the symptoms?

    You could ask them this though. For the symptoms you are having there must be a number of diagnoses you can go through and then they can be eliminated for your benefit. You can then also highlight your asthma medications help you so you don't want them to be removed.

    I am not sure how or why we live in an age where we are surrounded by all this machinery that doesn't even aid in helping a person but just managing illness. I got most of my benefit from asthma uk and talking to specialists elsewhere. Try to talk to as many people as people and don't stop whatever is helping you.

    I like others, have little faith in the tests they perform. Lung functions can be up and down on different performances. Peak flows are affected by so many different factors too. I find the best indicators are how you feel.

    All the best

  • I suspect I'm not the only person who will agree with you about the virtual over reliance doctors these days have on 'machines'. If doctors can't call on experience, knowledge acquired through years of study and practise, and, let's face it, a degree of good old fashioned intuition to help them with a diagnosis there's something wrong their training.

  • I remember when I was first diagnosed and the meds helped. At this time though, the amount of help asthmatics get as they do now, wasn't available. It wasn't until a good 10 years later I went through numerous new medications and found some of the new preventers that helped me hugely.

    So, the problem is in terms of what the drug does. The drugs eventually try to stop symptoms arising from triggers. In major inflammation scenarios it is steroids and antibiotics, and maybe oxygen too.

    Then in an attack we have other quick relievers.

    That's it.

    So, we all know these work because we have been there. We don't want to be on steroids because the side effects are bad. If this is the case, and I hope you are following me here, why is there such a pause and questioning.

    I recall being in numerous situations and experiencing the massive discrepancies in understanding. I don't know they are discrepancies merely on personal experience but also from strong positive interaction with experienced nurses, specialists and doctors.

    Some of the major drugs have minimal side effects and they work. We know they do. If they machines only use is to highlight major illnesses, almost terminal illnesses, I don't understand their need if we can rely upon symptomatic response instead?

    I say these things because in my view the original poster can go through trials of numerous available meds to find a good fit and that good fit is out there with the right Doctor.

  • Very true, I feel like my specialist is being 'too thorough' in many ways.

    My symptoms are pretty text book for asthma - allbeit I don't always wheeze and chest sounds tend to be clear.

    But because my lung test improved abit ( although still low) she's happier with that, but at the time I hadn't had attacks for several weeks, so yes...I was slightly better.

    The ct scan isn't showing anything other than nodule and opacities ( probably from last infection), so she's happy with that.

    When I was in hospital ( 2 acute attacks) nurses and docs all calling it asthma because they ' saw me', although doctor did add they was also 'more to it'. But wouldn't expand on it as I was under care of different specialist.

    I feel now that the specialist is ignoring all this, because she has lung test /ct telling her things.

    Right now, I feel I'm either the one who's making more of it all....dramising it all even.

    Or docs wrong as over thinking my basic symptoms

    ;(

  • I think it is best to look at it this way.

    What can they do? The answer is, very little.

    I have been around the asthma community for some time and I have seen how people respond and deal with asthma. It's usually the same old same old. The same drugs and the same management.

    The fact they can do very little is the problem but also the reality. Asthma is not curable so you can only be addressed with medication. What I think you need is a way of coping with it and a better medication set up as well. For that you would need the right people to tell you what to do.

    I think you could just ask to try different medications or just continually ask what is wrong with you and then see how things progress.

    All the best

  • Thanks bunny, good advice.

    I just want specialised to say ' it's asthma' and don't doubt herself by next time I see her, then I would have a clearer pathway to it all.

    She's now asked me to have asthma challenge test ' just to make sure'

    I would have thought the respiratory ward who saw me having 2 acute attacks and confirmed asthma was enough.....

  • Exactly. That's what helps. The name. It could be other things. Allergies, inflammation from food. Some joint and soft tissue issues. It can be absolutely anything else but this completely pointless undue worry created from tests after tests without even any guidance or instruction is, unhelpful and it causes far more strain on the system because a person will continue to use the system until they have some reassurance.

  • Not to mention the stress it causes the patient, which is not good for anyone, least of all asthmatics.

  • Stress is always a significant factor in most illnesses. I am not sure why this isn't usually considered.

  • Sometimes it is, and unfortunately sometimes at the wrong time. I've been told that a medical condition (not asthma connected) was due to stress when it most certainly was not, and had the specialist doctor concerned listened and considered everything I'd told him he would have realised just how wrong he was. In that instance all he succeeded in doing was to create frustration which, inevitably, leads to a certain a amount of stress. I've since changed specialists.

  • The way stress affects the body is pretty huge. It acts in many different ways and prolonged stress creates prolonged illnesses. I think it is true that something can be due to stress, but you don't then tackle the stress to cure the stress. Once the stress becomes physical and a physical illness, you have to tackle the physical illness. This is what a lot of modern medicine doesn't do. I checked for all the major illnesses from diabetes, cancer to the heart disease related illnesses and all had stress relationships.

    Unless they want to remove all cars to remove traffic jams and lower working hours in the world, they will have to treat the physical illness.

  • Try proteolytic enzymes and strong probiotics. Cured me after 40 years chronic asthmatic

  • Hi, are these both to build up immunity out of interest?

  • hi worked for me, with a healthy diet and sensible exercise programme don,t see why they should not work for everyone see clinical trials for serratio-peptidase and info on 14billion probiotics

  • Can I ask what your evidence is for this? Were you part of a clinical trial? These other clinical trials you mention, how many people took part in them, and can you provide links to the resulting papers?

    You seem to be claiming that these two substances have 'cured' your asthma. But you are just one individual, and a sample of one does not make a viable statistic. It is well known and well understood that asthma status can change (my own son had bad asthma as a small child, but very rarely needs to take an inhaler now - all achieved without the use of probiotics and enzymes I might add:-)) so how do you know these two substances were responsible for the change in you? If it was them, that's great, but you might want to bear in mind that there is considerable variation in how asthma affects different individuals and what was efficacious for you is not necessarily going to be so for others:-).

    But you are right to recommend a healthy diet and a sensible exercise programme (though the latter has to be carefully thought out for those who suffer from exercise induced asthma). It is a good idea for everyone and will improve the health of most people over time - asthmatic or not:-).

  • My Asthma was late onset after anaphylaxis caused by aspirin I am now 72 and took all the drugs available over 40 years including steroids never better for long stopped getting chest infections after I started taking probiotics clinical trials carried out in Germany just google serratiopeptidase

  • Hi Caroline, it is difficult I am glad you have a good specialist, I started with asthma and allergies and was not controlled changing meds all the time and 15 years later they gave me a CT scan and found I had both lungs full of cysts so when you say nodule and opacities make sure they know exactly what they are..take carexx

  • Thanks happy ;) ....wow 15 years with no ct ;(

    Yes, I've been clear with specialist as my dad passed from lung cancer 3 years ago ( just 5 weeks after diagnosis) aged 62.

    I'm on a 3 year plan to monitor the nodule. The ' haziness' on my right lung base has been there on every ct in last 6 months tho....and was worse after my last few attacks, they say from ? Infection.

    She taking about bron/ endoscope in January if my next lung function not improved.

    Take care too ;)

  • thank you Caroline. Let us know how you are getting on xx

  • Hi I have been going through the same thing over the last 2 years i have had 8 hospital addmissions - I gave up with one hospital after they passed me from pillow to post and told me om not adthmatic after 30 years of being asthmatic they did a mannitol challenge and came negative sent me to ent who ruled out vocal cord dysfunction only findings are various allergies grass, tree, cat, dog. nasal pollypos, deviateted septum and an intera arterial shunt a problem with my heart - I still on my Meds to treat my 'asthma' but cons at hospital number 2 beliveves it could be esinophillic bronchitis insted Im at the point where I dont care about the diagnosis I just need to treat what ever is causing symptoms.

    hope they get to the bottom of your asthma mystry soon