My appt today :)

Since the lovely people who helped on the other thread expressed interest in hearing how it went thought I would give that one a break and start a new one.

No ranting! I'm actually pleased, they were really nice. Saw the reg who said my summary and PF chart was really helpful, did the usual (what a surprise, I don't wheeze). She went to fill the cons in on what was happening but it turns out the cons already knows my case, has read all the notes and spoken to my GP.

Basically, they said they will do a few basic tests again but because I've already had loads of tests at the other places they don't think there is any point in keeping me at St Mary's and running everything again, as they reckon they're not going to be able to find out what it is there. So referring me to Dr Menzies-Gow's 'weird asthma' clinic at RBH; they will also look into this odd dizziness problem I've been having as well.

So bloods today (took ages!) and basic spirometry, next time another echo and more lung function plus possibly an ECG. Next clinic in 3 weeks, was meant to be 2 but they had to squeeze me in.

The outcome is not all that different from before but the difference in attitude is huge! The reg did say my PF is not typical of asthma and it may not be that but instead of saying 'well, we can't find anything so there isn't anything there, go away', they said 'you do have a problem, I can see it's bothering you and it needs to be sorted but we can't do it here.'

All in all I am pretty happy. If only more doctors could admit they don't know and need a more expert opinion!

24 Replies

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  • That's great philomela :)

  • Wow!!!

    I am so pleased for you Philomela. Did they actually call it the 'weird asthma clinic?' I prefer that to 'non-classic asthma.' Somebody is actually listening to you! Yeah!!! xxx

  • Really pleased to hear this. The attitude of the medic makes ALL the difference I think. Our lovely GP and consultant have sometimes not been able to help but they are always so nice and encouraging that we accept it. After all they dont know everything and asthma is such a difficult thing to treat.

    You've been through a lot one way and another so this is great news. Good luck with the rest of the tests. xx

  • So glad it went well!

  • Wow what a great result to go RBH.You will soon get the answers you need xxx

  • I am glad you have found a consultant who is listening to what you are saying and also recognizing there is an issue even though they are not sure what it is. Glad you also have a referral to RBH. Hopefully you are now on the road to getting some answers...

  • Thank you everyone! I am pleased with the result; the nurse and everyone before was lovely but right up to the time I went in to the room I was so sure it was going to be like before.

    It was just so nice not to have to push and push to be listened to; I had wanted to go to RBH if they couldn't help but I was expecting to have to push and ask and get my GP involved, not for them to suggest it straight off. I also felt they'd really done their homework on me (my first cons never read my notes and it showed.) I realise they all see much more severe cases of everything but St Mary's are the first apart from my GP to make me feel as though even though I'm not the worst they've seen, they're still going to do their absolute best for me.

  • Thank you everyone! I am pleased with the result; the nurse and everyone before was lovely but right up to the time I went in to the room I was so sure it was going to be like before.

    It was just so nice not to have to push and push to be listened to; I had wanted to go to RBH if they couldn't help but I was expecting to have to push and ask and get my GP involved, not for them to suggest it straight off. I also felt they'd really done their homework on me (my first cons never read my notes and it showed.) I realise they all see much more severe cases of everything but St Mary's are the first apart from my GP to make me feel as though even though I'm not the worst they've seen, they're still going to do their absolute best for me.

  • Thank you everyone! I am pleased with the result; the nurse and everyone before was lovely but right up to the time I went in to the room I was so sure it was going to be like before.

    It was just so nice not to have to push and push to be listened to; I had wanted to go to RBH if they couldn't help but I was expecting to have to push and ask and get my GP involved, not for them to suggest it straight off. I also felt they'd really done their homework on me (my first cons never read my notes and it showed.) I realise they all see much more severe cases of everything but St Mary's are the first apart from my GP to make me feel as though even though I'm not the worst they've seen, they're still going to do their absolute best for me.

    Oh and made me laugh as she looked a my X- ray and commented that my heart was in the right place...don't think I've ever heard anyone say that and mean it literally before lol!

  • Thank you everyone! I am pleased with the result; the nurse and everyone before was lovely but right up to the time I went in to the room I was so sure it was going to be like before.

    It was just so nice not to have to push and push to be listened to; I had wanted to go to RBH if they couldn't help but I was expecting to have to push and ask and get my GP involved, not for them to suggest it straight off. I also felt they'd really done their homework on me (my first cons never read my notes and it showed.) I realise they all see much more severe cases of everything but St Mary's are the first apart from my GP to make me feel as though even though I'm not the worst they've seen, they're still going to do their absolute best for me.

    Oh and made me laugh as she looked a my X- ray and commented that my heart was in the right place...don't think I've ever heard anyone say that and mean it literally before lol!

  • so glad you had an understanding doctor who listened. im really impressed they did some background reading! a nice dr really makes a difference doesnt it! even if youre no further to an answer. really hope RBH has some answers for you!

    B x

  • Thanks!

    Just realised I forgot to say to JF: no they didn't say 'weird asthma', that was me lol.Would love it if they called it that!

  • I am so pleased that your appointment went well

  • That's great. It makes such a difference when they have a friendly helpful approach. I have the (mis)fortune of seeing rather a few GPs and consultants in the last few years for various reasons. I particularly remember one GP who obviously had not read my notes 1st and infamously asked 'who on earth put you on that dose?', erm it was you as asked by the asthma nurse.

    Know what you mean about wishing 'more doctors could admit they don't know and need a more expert opinion'. May see you at RBH? My cons was similar to your previous experiences but he did have the good grace to admit it.

    JF, I am being referred (hoping letter is typed finally) to difficult asthma clinic aka atypical/challenging/unusual & I think weird and awkward also came up in conversation ;)

    P.S. Philomena, in regards to your heart comment, the medical/anatomical term for right instead of left position is dextrocardia & believed to occur in about 1 in 12,000 people

  • I might well see you there TJ - do you know who you're down to see? They said Dr Menzies-Gow for me as he is the one with the reputation for dealing with 'awkward' types such as us.

    Don't know about the timing - they rather confused me with some of the details about what happens when and how, and I wasn't feeling particularly intelligent anyway due to lack of sleep! The reg said she would ask my GP to refer me as apparently that is quicker? Might be an idea if your cons drags his heels. I asked how quick and she said 'very, if your GP refers' so it is entirely possible we could coincide - we can swap appt times -though it was a bit odd as sounded like she would ask next time I came, and not sure why they can't do it right off if they've decided?

    I had heard of dextrocardia though didn't know the stats so thanks - saw it on a medical programme once so I kind of guessed that was what she meant but made me laugh still!

  • Thanks or letting us know the outcome. Pleased you had a positive appt. goo luck with the Brompton hope they are helpful. Brace yourself for more tests and re-testing of tests you've already had it can be very exhausting.

  • Thanks Philomena, am waiting for letter to be typed. Didn't know GPs could refer quicker but not surprising given the snail's pace of hospital letters. I don't know if mine would without the consultant letter first. I think referral would be sent to the same Dr as well but don't know who I'd actually see. I asked RBH a while ago and they said clinic wait within a couple of months max then if appropriate a date is made for approx 2-3 months time for a 5 day admission for assessment involving all necessary tests.

    Definately, let me know when you find out about your appt and maybe we will coincide?!

    P.S. What did they think of atrovent use? My cons was not impressed when I said better on it, asthma nurse had sensibly suggested continue with that even if steriods not so helpful

  • Neither did I! But they seemed to think it would be quite quick. They didn't give a specific period but given they are pretty speedy at St Mary's (booked first appt with 13 days' wait, then they wanted to see me again in 2-3 weeks), I imagine they're not talking too long - but I guess RBH would know more about what they themselves are going to do! Also I have no idea if my GP's letter from before will do or if he'll have to do another one, and whether they're already doing it or waiting for next time.

    Just to clarify, did they say month or 2 for clinic then 2-3 months from clinic for the admission, if appropriate? Not that I have any idea what they're planning specifically, but I think St Mary's felt something beyond the basic tests would be needed and they definitely talked about a defined set of them. I don't know whether they meant the difficult asthma protocol specifically, but gave me Dr Menzies-Gow's name and said I could look it all up.

    Will def. let you know about appt; we'd better be careful not to wear the same dress if it is on same day ;) (My resistance is crumbling lol)

    They didn't really discuss Atrovent, but I had put it down so if they saw it, they didn't object. I'm actually going to see if it's possible to be given Atrovent, or even a mix of Atrovent and Ventolin, for my reversibility test as otherwise it's just going to show nothing again.

  • You are lucky there with waits. Here it is can be a few months, usually cancelled and then rebooked weeks later. I emailed RBH, they were quick with replies if you would like more details. I was told the difficult asthma protocol is now known as a systematic assessment of asthma.

    Yes, to clarify the waits were as you said. It was in early Jan a month or two wait for clinic i.e. end Feb/early March and then 2-3 months for admission if appropriate.

    Hehe, I don't really do dresses so you're safe, shoes and bags however a different matter. For anyone wondering on the rather random change of subject, dress shopping mentioned off auk.

    Not sure if I had a reversibility test apart from after methacholine challenge which showed 20% increase I think. Consultant didn't pay any attention to that either though.

  • Yep my local was like that too - one of the many many reasons I didn't want to go back! I was first referred there in Nov, and after all the mess-ups and the asking to go somewhere else and waiting to go back to my GP my appt at St Mary's was less than a week later than the local one would have been.

    Don't think I'll wear the dress anyway lol - think something easy to get on and off is called for judging by Wed. But good to know we wouldn't be in the same one.;)

    Thanks for clarifying on dates! Hopefully won't be too long, am hoping they are already sorting it and not waiting. I hope your cons gets his act together. Why exactly did he feel fit to ignore your methacholine challenge?!

  • Had similar with ENT and also went elsewhere.

    Hmm, do you mean you actually had them listen to your chest etc, don't remember ever having consultant do that. Sorry meant didn't pay attention to reversibility not methacholine challenge - he seemed to decide as that was normal quite possibly not asthma. Didn't pay any attention to how I felt at the time which was quite good until coughing after.

  • Your cons is rubbish! But at least he seems to have twigged that he doesn't know what he's talking about. Also he sounds a bit lazy...

    Yep they did listen to my heart/chest, also had chest X-ray and the nurse did some stuff beforehand like basic spirometry and sats/pulse (somehow I got exactly the same result on all 3 PFs which never happens usually!) So bit more thorough than your one though sounds like this would not be hard...I feel the RBH is definitely going to be a notch up though!

  • True enough, did have the good manners to say that from the start. Had a chest x-ray already as requested by GP, again bloods at GP. They do spirometry at least at every appt but have never apart from methacholine challenge appt told me anything about stopping inhalers etc so have had to check. Think he's basically not sure what's going on as ok in clinic and well when tests done which thus had good results.

  • Hmm, I wonder if they got it right with the methacholine challenge and when to stop your inhalers, given what else you've said about them not telling you stuff?

    When I went and looked the test up after my GP suggested I might need it, the sites (including a really detailed one for professionals on how to administer the test) said you have to be really careful and can't just stop everything on the day; some things (like montelukast) have to be stopped 4 days before! If this isn't followed correctly it can lead to a false negative result.

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