Hmmm not sure where to start.. good morning and hope your all doing ok?
So as you know been struggling with new severe asthma all this year see my previous posts and hospital admission a month ago. Was under respiratory team who then ref me to severe asthma clinic had my initial appointment yesterday 1.5hrs with reg.
Basically long story short he doesn't feel it's my asthma driving my symptoms as "not typical asthma symptoms" for example never a wheeze even at worst, and constantly SOB which apparently "doesnt happen with asthma - you have an attack and you recover". And not COPD -thank god.
He then explained xrays, ct were all really good and clear although "there is no specific testing for asthma diagnosis".
He explained I was observed while waiting for hyperventilation test and my resps were 42, I said yes I've been saying for months my resp is high especially given I'd just trecked from car to other end of hospital with difficulty so couldn't breathe 🤣😂.
My hyperventilation test I have barely any c02 due to me breathing rapidly which is causing sever pins and needles and constant numbness in thumb.
Lung function test is better than expected for someone of my age, sex, and height - WOW SAY WHAT??? As I'm sat there out of breathe seriously confused at this point.. he said "your very symptomatic and I can clearly see your struggling I've just walked with you and you could barely do 300m without increased SOB"
Luckily for me I spent hours typing up my history, symptoms, triggers, concerns and questions and handed him the folder as by this point was becoming mind blown.
So basically worked through list and what I think he's said now is its NOT asthma driving it but probably do still have asthma, I have high end of normal range eosinophilic it hasn't spiked into red since 2017 - so does this mean I don't have eosinophilic asthma? (Slightly confused) So I don't have severe or uncontrolled asthma? But what he thinks I do have is severe complex end of breathing pattern disorder and basically always hyperventilating.
From today I've to stop spiriva and reduce prednisolone to 10mg for 1 wk, then to 5mg for 1 wk then have cortisol bloods and and allergy tests as allergies could also be driving this. Also he said my asthma could be ok because I've been on steroids for a year... I'm seeing him again in 3 months, in that time I should have been seen by physiotherapy and psychologist he will also ring me inbetween to check how things are.
Literally didn't sleep last night trying to digest all this. But now I feel like a fraud if not asthma 🤦♀️ can I still stay on this forum as your all so helpful and supportive? X