Sorry in advance for possible rant/letting off steam...
I did post this on my other thread but it was very long there (sorry!) and got buried.
I know I'm lucky not to have the worst of it (and I hope everyone is currently OUT of Costa and feeling ok, especially those who've been spending a lot of time there). Just having difficulties now, as I had my first cons. appt on Thursday but feel no closer to solving the problem of what is wrong or getting any medication, and a bit worried they're just going to leave me hanging until next appt.
Previous cons (who I didn't like because he didn't seem to listen much but is apparently expert on asthma) said not asthma. It FEELS like asthma and a lot of symptoms are there, but apparently my lungs are normal (because no wheeze? I can never manage to wheeze for appt though do at other times). However, lung function tests show below predicted this time whereas because of champion singer/oboist lungs would expect above predicted as last time. Sats don't drop on exercise though even though I am now breathless on minimal and sometimes no exertion.
Consultant suggested it may be vocal cord dysfunction and they may test for that - apparently this can mimic asthma and co-exist with it, anyone else heard of it/have it? Also have to see cardiologist because of racing pulse. Or possibly muscles round lungs dysfunctional. And cons. is always booked up ages in advance so horrible suspicion I will have to wait months again.
Sorry for being long yet again! I'm probably just venting but despite good weekend with friend I feel rubbish and am shuffling around like an old lady.
xxx
8 Replies
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I was diagnosed as having laryngial spasms at 14 that lasted for 2 years and came on without any warning and in seconds and totally shut off my airway (particularly breathing out) making me go blue round lips, dropped my O2 sats and increased my heart rate but when they found that out I was told not to go to Aand E and to just ride them out. they never doubted the coexistance of severe asthma though. Now all symptoms are just asthma. I have very brittle asthma and spring back up as quickly as I fall so often have the same problem as you. By the time I have nebbed at home and got to drs my chest is open again. What I do find however is that you are often left hanging from one consultant's appt to another (although my new consultant does email me) as this is the way it isI have a feeling this isn't necessarily what you wanted to hear. I guess it depends where you go though
Thanks for listening and responding - is good to hear back about experiences as I was more venting and looking to share angst! Really what I want to hear is consultant ringing me up saying 'we've found out what it is, come in tomorrow and we'll give you some totally side-effect free medication that will fix it'. Like that's going to happen
They do leave me hanging a lot but I peeked at my lung function test results and something - didn't quite see what - was 52% of predicted so I would hope they'd be in touch about that. If I do have asthma it's not brittle - more moderate persistent right now though VERY persistent! I'm lucky to have avoided A&E and nebs so far, but feel frustrated that I have no answers.
I would question your lack of meds really then. you can always phone the consultants secretary and question your lack of follow up care, if they think vocal cords then you will need ENT referral too and I know it is widely used for asthma (I am on it too) but I thought Spiriva alone was more a COPD treatment not asthma, why no inhaled steroids?
Does your reliever help you?
Think I'll give this consultant a bit longer - only saw her for the first time last week. I was more gloomily anticipating based on my experiences at the other hospital, who tended not to be great at communication. I may be having a bronchoscopy to check for the vocal cord issue (which slightly confuses me as I looked it up and sites suggested a laryngoscopy would be more appropriate, but may well be factors I don't know about - not going to trust me and the internet over consultant!)
Lack of medication frustrates me but I can also see why I don't have it - I've already tried Clenil 800 mcg plus Serevent, then Symbicort with Bricanyl as a reliever, none of which did anything. Ventolin as a reliever is not very effective, though based on a scratch home test I did with my peak flow meter it's obviously doing something as my PF went right up after about 5 puffs in a short space of time (but I have to really pump it in to notice anything). I was on Spiriva as my GP thought the hospital might try it and wanted to save some time by having me try it before I went, since I'd already tried everything else with no effect.
I guess I can see why they don't want to try any more medications without knowing exactly what I have. I just hope they find out quickly so they can decide on treatment!
Makes sense I guess. I have had bronchs and they do show you your vocal cords but then carry on into the upper lobes of your lungs and do whatever tests they wants. I have saline washouts, brushings and biopsies but think can be different
Guess it may be worth seeing what is going on down there as may be a lowlying infection that needs prophylactic antibs or inflammation
I would give them a little while but if you feel you are getting worse then ask to be seen sooner
grrrrrrrr just had letter through for next appt at chest clinic - 11th August!
I know there are lots of people needing the clinic and only so much time but I have no idea what's wrong and no medication and while it's not as bad as some people have it, it has been getting worse. What the hell am I meant to do till then?!
hospitals are like that the best one they do is send one appointment then change it a week or two before the appointment
X
Yeah, I had that before - one was postponed twice! I have to say that 4 months is a record for me, though probably not for others. I am seriously wondering if I can afford to go private - I know you get the same people and that's fine, but at least it might be quicker.
Just makes me feel like I'm not being taken seriously, even though I know it's bureaucracy at work.
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