So looks like maybe I don't have asthma after all.
Had letter from consultant today (dated 21st April - really think they need to get their mail system sorted out at my local hospital as last one took ages as well judging by date on letter) saying 'lung function tests showed no evidence of asthma but I'd like to arrange a bronchoscopy as you may have vocal cord or upper airway dysfunction.'
So may be getting somewhere, though confused - I don't want to have asthma (EDIT: really don't, especially after reading posts on here about how bad it can get, so hope nothing comes across as me sounding like I somehow 'want' it.)
However, it would make so much more sense given my history; instead I probably have something weird I've barely heard of.
I've heard of VCD now and other people have mentioned it, but has anyone ever come across or been told they have 'upper airway dysfunction' which is not asthma? Only things I could find was Wiki article which suggested it would cause hypoxia (my sats are always normal) and ventilation/perfusion mismatch (have had VQ scan which was normal), plus something called 'reactive' UAD which is caused by irritants.
Sorry for another long post! Hope no-one minds if I still hang around here for a bit as this is such a great forum and not sure there's going to be one for whatever weird thing I turn out to have.
Well could have both. My asthma triggers my vcd. And diagnosis is hard ent are the best and a largnoscope during an attack is only true way. Vcd is easy to manage once you understand it. Pm me if got any questionsg
Hi Bizkid, have PMed you.
Am also a bit confused about the bronchoscopy but think they want to look further down as well.
Consultant thinks lung function tests indicate not asthma - I'm assuming there wasn't reversibility, or not enough though I haven't seen actual results - maybe taken as a whole they showed not asthma. Not that surprising I guess as Ventolin hasn't been working for me (though my PF did jump up once after taking several puffs).
Is it possible that I could not respond to Ventolin (also haven't responded to preventers Clenil, Serevent and Symbicort) but still have asthma and the tests would not show reversibility because I don't respond to what they were using as a bronchodilator? Or should salbutamol work for everyone with asthma?
I really don't *want* asthma - this board has shown me how much of a pain it can be - but while I don't want to labour the point I am confused given the mismatch between my symptoms and history and what the tests are showing.
Just hoping they can sort whatever it is as while I know it could be worse I am sick of feeling so breathless all the time. Sorry for moaning again!
In almost all asthmatics there is reversability. There is more general signs such as inflamtory markers on bloods. Bronch could prove disprove asthma by amount of redness but not the best for upper airways need to see ent.
Could just have stage one asthma. So just need a ble.
Astma is a pain ruined my life!
In almost all asthmatics there is reversability. There is more general signs such as inflamtory markers on bloods. Bronch could prove disprove asthma by amount of redness but not the best for upper airways need to see ent.
Could just have stage one asthma. So just need a ble.
Astma is a pain ruined my life!
Kind of what I thought re reversibility but vaguely wondering as still a little confused.
Also not quite sure why not ENT/laryngoscopy now have read more about VCD but maybe they're looking for something else lung-related at same time (am hoping nothing bad though I would have thought they wouldn't wait for ages to send letter if they thought it was).
Broch can show changea to surface of lungs woundnt show anything major. For my asthma care bronch findings play allot as my lyng fubction is normal are reversability is small. For some clever people can hear vcd when doing peak flows and looking at spyro curves upper airway isnt so steep drop at beging. I think need to say to cons next time you see him. Looking at info do you feel you fit into vcd?
It is not easy when appts lead to more questions rather than some answers, is it? I had a bronchoscopy a couple of months ago and it came back with 'normal airways' and the biopsies taken showed no inflammation. This was really good news but at the same time made me anxious because i was still having daily variable 'asthma' symptoms as well as constant SOB on activity. I am glad they did one though because it confirms/rules out their ideas of what it is.
I guess what i am saying is that it is good that they are being thorough with you and at least you may learn for sure what it isn't.
I am also still keen to go on this forum even though i may not have asthma because my symptoms are so similar and i have learnt so much more since joining and felt less alone with being different to people with 'classic' asthma.
It is frustrating how slow things take though isn't it?
Jac xxx
Jac, sounds like you're having a pretty similar experience to me - really quite frustrating as you say! I am glad they're being thorough though in this day and age you would think they could find some way of communicating more effectively - I could have done the repeat lung function and probably had bronch by now even with the bank holidays if I hadn't had to wait for letters. Thanks for sharing experiences, I hope you get some answers!
Bizkid, sorry not quite sure what you were suggesting I say to cons?
Re VCD, not really sure. I have had a hoarse voice occasionally though not for a while now, and a couple of people including experienced singers have commented that I sound like I have something at the back of my throat that's restricting me when I sing, even though I can still produce a perfectly reasonable sound. I have no idea if this is significant or due to lack of technique/poor technique - also find I have sore throat/strained feeling after singing. (Think only dr who knows about singing can answer that one really).
On the other hand all the things I've seen about VCD suggest that it tends to come in 'attacks' especially after exercise whereas I am breathless almost constantly at rest and more when I move about; I can only walk slowly. Also restriction feels like it's further down than the throat/neck and cough feels like it's coming from further down as well.
Hence confusion - thanks for the extra info and reassuring re bronch.
My main focus now is not to get stressed with the delays and not to have high expectations on how fast they can solve my problems as something admin wise always seems to go wrong and delay the tests/consultant appts.
I think they are doing a fantastic and thorough job at the hospital i am at but, i think they forget any delay means we are continuing to struggle with breathing and it is so tiring/stressful to manage everyday things without an end in sight.
I am having the v/q scan you mentioned you had on 18th May and the consultant has said i have then had every test going so that made me feel a bit better at how long it has taken. And fortunately the latest med change has helped me alot so life is a bit more bearable. If ever you want to pm me to sound off feel free because it is tough, what we are going through!
hi - thats kind of good news isnt it? dont know alot about vcd but at least it isnt life threatening (at least i dont think it is )which is fantastic.
Asking for referral to ent. Sound vcd is a possibility can be. small things you dont notice. When my.vcd was bad was tightness at the bit where neck joins body. The singing bit could be vcd. As can be worse when voice is under strain and long breaths. Yes chronic breathlessness dosnt sound throat like but also might. Not be asthma dysfunctional breathing disphram problems. If i was you would have bronch take simple.voice care exercises as vcd isnt a drug fix condition and ask about seeing ent
Jay, yes should be good if true (though I have been one of the lucky ones and not had any Costa or severe exacerbations of whatever it is so far). I was really hoping they'd have answers though which judging by Jac's post was extremely naive of me - they do seem to forget sometimes that these delays mean more time you can't breathe from whatever it is - doctors being thorough but admin grrr. Hoping it does turn out to be something fixable.
Jac, your experience just sounds more and more similar even though I doubt we have the same thing. If they let you take an iPod or something to the VQ scan do, it's possibly the most boring thing ever even though I made a Geiger counter groan at the start (very geeky of me I know that I think this was exciting)).
BIzkid - thanks - you know so much about this though for your sake I'm wishing you didn't! I'll ask about ENT depending what they find - have been looking at 'alternatives to VCD' but don't feel I know enough so might wait till after bronch.
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