Hi, I hope this is ok to post here!
So I haven't been around here for a few months now, but I wanted to come back with a few questions. I've been having severe breathing difficulty for a year now, which has resulted in me leaving my university course and living back home with my parents. At first I assumed it was asthma, as I was diagnosed with asthma at 14 (I'm 20 now) and my symptoms are breathlessness, chest pain/tightness, coughing, and tiredness. I've been with a respiratory consultant since January after my GP at uni referred me and have had countless tests done (CT scan, blood tests, camera in lungs, camera to look at vocal chords, exercise test, echocardiogram to name but a few lol) but all have shown my lungs are fine, which led my consultant to thinking that it ISN'T in fact asthma that I have. The only slightly strange thing is that my heart rate is very high and gets higher when I exercise (when I did the exercise test it started at 120 and kept going up haha), and of course the fact that I'm breathless all the time!
My respiratory consultant referred me to a cough clinic as I have been coughing all the time since I was 6, and I saw the consultant there in September. He ordered a histamine challenge for me as he doesn't believe I have asthma and wanted to rule it out. He took me off all inhalers prior to this and I went into the challenge thinking I wouldn't react. However, I did react (it was a horrible challenge and had me feeling sick for weeks after!) so now I am rather confused!
This has been such a long journey and I find myself being told 'no, you definitely don't have asthma' one minute to 'yes, you have all the symptoms of asthma but the treatment doesn't work' the next! One reason my respiratory consultant thinks it is NOT asthma is that (he says) I was on very high amounts of inhalers back when I first got ill and they didn't help. I was on symbicort 200, put up to symbicort 400, then put onto a combination of pulmicort and oxis for a few months. I was also on two courses of steroid tablets, for a week each time, and none of these helped my breathlessness, cough, or chest pain. My consultant then tested me for many other things (VCD, acid reflux, dysfunctional breathing, hyperventilation syndrome, etc etc...) and all have come back negative. His next step is to do another exercise test, but this one will be invasive so he can have a look at what's going on in my blood when I exercise. I'm also seeing the cough clinic again next week, for the first time since the histamine challenge, and have no clue what he will say now!
I'm just feeling very alone and very confused. My breathing is extremely difficult and I get chest pain and breathlessness from doing the tiniest thing (standing up, some days). Since I had my inhalers taken off me my chest aches a lot more and I find myself tiring much more easily, but I start to question if this is because I have asthma or if it's because I psychologically feel better taking SOME KIND of medication, even if it isn't actually helping me. The consultant at the cough clinic was so sure I was misdiagnosed with asthma and my cough and breathlessness is caused by something else, but he was also positive I wouldn't react to the histamine challenge, and I did. So now I have no clue what to expect!
I hope this is alright to be posted here, I'm just wondering if anyone else has any experience of being diagnosed and undiagnosed with asthma? I have been ill with this for so long now that I'm just tired of not knowing what is going on with my body, the symptoms are so difficult to manage when I have no treatment/diagnosis and I'm left to deal with it on my own. If I ever have to call an ambulance the paramedics are extremely reluctant to give me nebulisers as my heart rate is usually through the roof, which I can understand, but it doesn't make it any easier when I can't breathe! Luckily I haven't been that bad in a few months now, but it's because I literally do nothing other than move up and down the stairs twice a day. I'm housebound and sofabound pretty much all the time and I just don't know what to do anymore, I've had so many tests done and none have shown anything specific.
Apologies for ranting and the long post. I do my best to stay positive, but a year of fruitless testing and no treatment has tired me out! Does anyone else have experience with anything like this? Thank you so much for reading!