I've had all sorts of things since October 2012, including the flu (or something like it: all this is post-viral), post-viral hyper-reactivity, asthma (first diagnosis at GP), pneumonia, chest infections (various, 'treated' with antibiotics), pleurisy, HIV sero-conversion illness (after assessment at A&E one day when things were a bit breathless), sarcoidosis (hospital consultant at King's), COPD (hospital consultant at King's, even though CT showed nothing, definitely no emphysema, and there was no ongoing bronchitis), and, a few weeks ago, asthma again (hospital consultant at King's). So I've been pretty busy!
Thing is, I called the nurse here at Asthma UK and spent a good half-hour on the phone talking about my symptoms, which are not thought to be particularly representative of asthma, even adult onset (which this is, if it is asthma: I'm 54 btw), and the best we could do is that I'm VERY atypical. Obviously, after all the crap at King's I don't trust them as far as I could throw them, which ain't far in my current gassed condition, so the latest diagnosis could easily be as dodgy as all the others.
What are my symptoms, then? Well, no asthma attacks so far, and I've been having breathing trouble for about 15 months. My shallow breathing isn't really affected, but deep breaths are hard to get, although I can get them: when I do get one, I notice that on breathing out there's a real urge to cough, and a strange soreness which I would certainly associate with inflammation that won't go away. My lungs feel tired and a bit sore all the time, although I am, believe it or not, going to the gym for weights and cycling a fair bit (going up hills is a lot harder than it used to be). I don't give up easily! But I'm depressed really, all the uncertainty and lack of progress on meds is doing my head in.
I've been on all sorts of stuff: two lots of antibiotics for the so-called chest infection, steroids for a week (pred, and it did seem to help a bit), I was handed a blue inhaler by the GP as a general help, but that stuff makes no difference to me at all, except a very small one in spirometry tests, and I don't really use it for obvious reasons. A month later I had more pred for a week, and again it seemed about as good as the last lot, but that was stopped before it could really do anything in my opinion; I blagged a brown inhaler off the GP practice nurse, which seemed to do a bit, though not as much as the pills, by which time I was up for my first appointment at bloody old King's. My spirometry was down a bit, so they diagnosed COPD immediately (prior to CT but after X-rays, which were both clear anyway) and gave me Tiotropium, which did nothing at all. I stopped taking it after a couple of months and went back on the brown stuff, which as I say helps a bit. Then it was time for Formoterol for some reason, still a COPD victim I was, and that did sod-all as well. So I kept up with my steroid inhaler just to take the edge off. Then I had more spiro, which was as follows:
FEV1 4.4 (134% predicted) with an FVC of 6.36 giving a very mildly obstructive ratio of 69.9%, i.e. 'normal'. Initial FEV btw was 3.9 improving to 4.2 post salbutamol, so a bit down. Anyway, that was the 'can't be COPD' message, and I was pushed onto Fostair, which ... makes no bloody difference! Still can't breathe properly, still very uncomfortable. My peak flow figures (EU), taken morning and evening, are usually between 600 & 625. Rarely I get down to 550, or up as far as 700.
Anyone share this kind of experience, or am I just, as I suspect, in the hands of idiots up at King's?