aagghh have first RBH appt tomorrow! Not that I'm freaking out or anything
Crossing my fingers they'll be good listeners; I so want to get this sorted been if it's not as bad as it could be! My lungs are currently being a little stroppy in anticipation; I've been told to stop meds for tests but haven't got to the point where they should be noticing this...Ugh stopping meds followed by LF tests, they had better show something significant or I will be really annoyed as so not worth it otherwise!
Please cross your fingers for me that I don't babble like an idiot as I normally do and come away feeling like I mucked it up and didn't get across what I wanted to say.
On the other hand I did talk to a lovely nurse specialist on the phone yesterday when asking about stopping meds; if he is typical then I'm a bit less worried.
Anyway...will no doubt be on tomorrow letting you know how it went, whether you want to know or not. Hopefully won't be a rant, as I'm sure you'vre all had enough of my rants lol.
I'm so glad you started this post as I wanted to wish you good luck!! I have been thinking of you with this day getting closer. I hope it is at least a stress-free day for you and an informative one. I look forward to hearing how you get on. I am interested to hear how the RBH copes with an 'odd' one. (Meant in the nicest way of course!) xx
Thanks! Hehe fine to call me an odd one given that it's true and I hear a lot. I prefer it from medics as it's an improvement on 'anxious' or 'hypochondriac' lol
Whatever happens, I am having a Ben's cookie afterwards. LF tests alone would merit that.
Good luck with you RBH appointment, there is nothing to worry about, the staff are friendly and very helpful and put you at your ease.
Good luck today, I truly hope you get something resolved! X
Well that was weird...and something of an anticlimax! Finished already, just had 15 mins with Dr MG and that was it, no tests or anything, not even weighed!
He did say sorry he couldn't fix me today and does seem to understand the frustration! Wants to book me in for an overnight stay for some tests I haven't had, which will probably be 8 weeks or so, then next clinic in 3 months when he's got my results and notes from all the other people I've seen. Can see why he doesn't want to repeat stuff without the info but is still frustrating as now I am basically waiting for the NHS, and had really hoped to get somewhere today, plus gave up meds thinking I would be having LF tests, grrr...well I hate them so guess better not to have them!
So dn't ask me about a typical first appt as don't think I've had it! Ugh. Hoping I do get somewhere eventually.
EDIT forgot to say thanks for your good wishes, including Glynis below!
Hope you get some answers when you stay for tests xxx
I am sorry that you did not get the answers you were hoping for from this appointment.
I hope everything goes OK when you have your tests done.
Thanks!
Don't get me wrong - he was really lovely. My GP understands my frustration, but I don't think anyone else before today has ever come out and asked if I've talked to anyone about it because whatever their cause 2+ years of these symptoms would be enough to stress anyone out - and he specifically said he wasn't saying the symptoms were caused BY stress, just that having them would stress anyone out! Apparently there are health psychologists and he offered to arrange for me to see them; wasn't sure at first but decided I would like to at least once.
I also appreciate that he said even if it does turn out to be hyperventilation there's no point saying that without doing something about it.
I guess I just thought I'd have more time, and it would be more in depth with lots more questions - I didn't get asked about what sets it off or how it feels or anything though I've really been trying to notice patterns and note them in my diary, and have noticed a couple of things I thought would be helpful for them to know like eczema flaring up with chest.
I did get my cookie though lol.
Awwww sorry you didn't get any answers now but at least you are on the right path to get some.
Having said that I do understand how frustrating it is!
They do sound very thorough. It's digging deep and looking for patience time, such a huge part of having asthma! Did they say what tests you would have? xx
I was surprised not to be grilled really as had heard they take you back to the beginning and do stuff again! Didn't want to badmouth first two consultants as he was making 'colleagues I respect' noises so didn't feel like I could say 'well they said this but I'm not convinced and neither is my GP'. Hopefully just necessary politeness (especially as I'd be surprised if he really knows my local cons especially as asthma isn't her thing); it's his job, surely, to question the status quo so perhaps they do the digging later - I did want to be asked about triggers, family history etc as I feel it is significant!
He did say and I have now forgotten...think histamine challenge (worried it will be unpleasant but spirometry won't change enough), and exercise test (ditto), but then got confused as he wanted to make sure about the VCD by doing a laryngoscopy while exercising (he said not as bad as it sounds) and something I've half forgotten about measuring blood gasses during and after exercise - not sure what that is but it doesn't sound nice unless he meant an exercise test with a finger probe, which I hope he did.
Ohh no when says blood gases will have the dreaded ABG's a sample of blood from the artery...
Though tests sound bad just hink that learning something... dont concentrate on what happens if sypro doesn't change just means in the case of histamine airways arent twitchy and over react....
A VCD diagnosis isn't a bad thing.. a scopes arent bad only makes eyes water at first...
Hiya
I had tests at RBH. Don't worry about the ABG they used the ear lobe when I was there it is fine and nothing like the ones in A&E. Not painful at all.
Take care
Lisa x
It can be really disappointing, when you have so much hope for an appointment and it comes and goes only to find that you have to wait for more tests... In time when the results are in hopefully there will be more answers than questions and they can find a way to take things forward.
Thanks everyone - good to know they'd use earlobe as the prospect of several of the other sort was offputting... Of course I said no questions then I think of a million a few hours later (and should have asked for him to remind me what tests he planned) - just felt like there was SO much that hadn't been covered and I'd been expecting this was my chance to discuss it. Also a bit surprised they didn't do their own lung function before the appt as had been told it was standard by one of their nurses.
My airways seem to be reasonably twitchy so it would be nice if they act that way when someone's looking - have expectations of it triggering symptoms but them saying spiro doesn't drop enough esp. since I am pants at doing spiro anyway. OK with tests but really do hope they show something useful!
re the VCD, I'm a bit confused...I had a bronch at the local while symptomatic (looking mainly at vocal cords) and they said no VCD, all fine, cons agreed fine when I saw her, then later letter seemed to say there was?! Can see why RBH want to test this during exercise but if it is that then have to wonder why I would get symptoms when not exercising as well (from other triggers etc.)
With your range of 'symptoms' and no definitive word on asthma or whatever, plus all the questions you had on triggers etc., I'd think a Health Psychologist would be the way to go. I'm told they go into a patient's history, family history and environment plus what seems to be all the little things you wanted to raise at this appointment.
Would seem the way to go. Sometimes we need a fresh look at a problem. Health or otherwise.
Thanks GrannyMo! I thought it was just for someone more neutral to talk to - and very much appreciated, since talking to drs feels like a minefield given I feel any reference to symptoms getting me down will be pounced on and that I can't seem to get across that the symptoms bother me without sounding like I'm a hypochondriac who thinks she has severe asthma (I know perfectly well I don't, but sometimes they seem not to appreciate that even non-urgent symptoms and poorly controlled moderate persistent asthma, which is what I think for perfectly sensible and logical reasons I have, are not great day-to-day - better than bouncing in and out of Costa I know!)
Didn't realise they did all this extra stuff though - very interesting! Maybe they can tell me how to talk to doctors without feeling I messed things up. Very true about a fresh look being a good thing.
The uncertainty is what gets to me, plus being left to my own devices without any idea what to do when symptoms are flaring but not urgent.
althgough no physical investigations where done.the dr did give reasons as to why... waiting for all the previous reports to come in and it seems he has gave you a clear plan of his intentions. think you just got to be patient. i dont think it was a bad or wasted consult
Thanks Gussypoo - good point but still think they could have asked for them when I was first referred - seems like it would make sense for anyone going to a specialist place for them to have that info so why not request it initially, then he'd probably have had it there and would have had a chance to look at it? Plus why ask me whether LF tests are normal - why not just do their own so can see for themselves, since I was told this was standard there? (I know I moan about them but also know they can be helpful).
Don't think it was completely wasted and you're right that he has a plan in mind which is good, but it seems like they could have got more out of it and perhaps managed the time aspect better given that I'd travelled from out of London to be there - OK I'm not that far away but still, for 15 mins...
But hopefully letter re tests will come through soon and then will know more.
Hi
I was in the a similar position to you about 1 year ago when I first went to the RBH, under Dr Menzies-Gow Clinic. When I first saw the asthma nurse specialist they invited me in for 1 week for tests, to find out how bad the asthma was and what else may be causing problems.
When I went back I did some of your test, which I would not worry about, as you have people around you to keep you okay.
I also saw the ENT specialist as I was checked for Vocal Cord Dysfunction (VCD) which triggers similar to the asthma, but mostly in the throat which restricts the breathing starting with lose of voice and finishing with real problems getting air into the lungs. The ENT consultant likes to try to trigger an episode so that they can see what is happening, hence they got me to run up some stairs which did the trick.
I felt the same as yourself at the begining, and although the situation is not completely resolved, I do have a better regime for dealing with the asthma/VCD/acid reflux, which makes up my bag of interest.
As my condition was not all asthma this was the main reason I was not getting anywhere, and is probably why they want to do test to see what else is going on.
I hope that this helps.
Best of luck.
Garp
Thanks Garp - yes it does help! Glad to hear they got somewhere with you and it's easier to manage now.
I'm hoping they plan to use a bicycle or similar with me, given they said 'while you're exercising'. I don't want to be running up the stairs with a tube in my nose lol (now there's an image...).
Hopefully the health psychologist will really be able to help you with this. Shame you were disappointed but sometimes really digging down takes time and a few different approaches.
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