Urgghh (warning, rant alert)

Sorry about this but I am feeling quite gloomy lung-wise atm (while as ever being aware it could be a lot worse and already is for some).

Thought I was coming out of the flare-up I've been having now for over a month. Was getting better, then kind of peaked and stayed, now is getting worse again, all as I reduce pred dose. Really not liking the implications here...am glad pred does seem to work as I didn't think it used to but I don't want to be on it long.

Basically, for me it's been the worst it's been for ages and it's been affecting what I can do, my work etc esp as every time I think I'm better and try to do things as normal it seems to get worse again, and I had to take a week out where I couldn't really even work from home. Feels like what should be a perfectly manageable workload is getting on top of me and I'm making stupid errors (partly because I'm knackered). I'm coming up to some big career decisions/applications and need to be on top of it all (plus I am worried I couldn't manage to do what I'm applying for if things were like this - I can't just take a week out where I don't leave the house and can't work properly.) Not to mention, although I don't earn my living from it, that it's making singing difficult and I love singing.

Cons appt this Wed and I am completely petrified. I need some way of getting all this across to him and for him to take it on board. He is nice and has listened more than others in the past but has been focusing on the breathing pattern side of things (defo improving, physio agrees) and thinking asthma is controlled; it really was improving before all this though I'd have liked to see a bit more control, but now it's sliding back towards how it all was before I got some effective medication - except the scary thing is now that I'm on loads and it doesn't seem to be helping as much!

I am absolutely terrible at communicating in these appointments (I can present in my masters classes, do public speaking etc without issues but this I can't do) so even though I've thought about it all and will be writing down reminders etc, I am terrified I will completely muck it all up and not get across what I want to say. Not asking for a miracle and I know to him it might seem relatively trivial given it's RBH and they see really complex severe cases, but I don't know what I'll do if I happen to be having an ok day on Wed (my lungs are great at making their better days coincide with appts then getting worse after) and he takes that as 'everything is ok, carry on as you are' because I really do need him to at least be aware that no, it's not all great and well controlled, have a rethink and see if there's anything that can be tweaked.

Anyway sorry about that rant, just needed to get it off my chest so to speak and crystallise it by writing things down. Not really expecting anyone to have a solution but it feels like it's really getting in the way right now.

65 Replies

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  • Hi Philomela,

    Sorry you seem to be having a rough time of it. As a non-medical person, I can't really give that much good advice as to what you could try meds/treatment-wise but it might be an idea if you print out the post you wrote above and take that with you? Or write it in the form of a letter rather than just making reminders. This way, you can clearly express what you are feeling, and he will have a hard-copy to look back on, plus nothing will get left out or missed. I used to make reminders for my cons appointments too but I found it very easy to get halfway through the list and feel so de-motivated at his responses that I would discard the rest!

    He seems like the sort of cons you can talk to and who will listen, so it must be difficult for him to understand exactly what is going on especially when (a) your lungs are behaving during the appt and (b) you might be finding it difficult to express your full concerns.

    Just an idea!

    Chukk

  • Thanks Chukkin! I'm leaving the medical bit up to him, it's just the communication I'm worried about so thanks for the suggestions. I've done that same thing where I just give up with my reminders because I feel like I'm not getting anywhere and what's the point of mentioning it - even though I have in the past got somewhere with a different cons when I persisted (he had more time though and grr, had to stop seeing him just when I'd got somewhere - it was a weird complex admin thing).

    I'm just trying to write it all down now in a way that makes sense to me - though I know it's not like doing a Powerpoint as he's going to want to break in and ask stuff; I just need to try and make sure I've got it all covered while still actually having a conversation as opposed to talking *at* him! Feels a bit like when I used to do debating at school and you had to learn how to maintain your train of thought/speech while the opposition was busy breaking in with points of information in order to derail it. I know my cons is obviously not trying to do this on purpose and this is not a competitive debate, but somehow that skill would still be useful and it deserts me, along with the ability to string a sentence together, in appts...

  • Hi,

    Another suggestion would be to write it all out in a way that makes sense and is easy to read (doesn't need to be a novel or anything) - then just hand it to him and let him read over it, explaining that you find it easier to write things down so as not to miss anything - he will probably read all the way through before asking anything.

    Chukk

  • Hi Philomela

    How r u?

    Sorry to hear about this.

    To be honest, I'm usually the same when it comes to speaking to the gp's etc too!

    I usually get all my mental notes prior to the meeting and then end up forgetting to say a part of it.

    Hope it goes well for you.

    8-)

  • Hi Philomena,

    I think it can be hard for medics to remember that while they see dozens of us every day, entire sections of our lives pivot around each interaction we have with them.

    I always come away feeling like an idiot and knowing that I forgot to ask something important.

    Writing a list isn't a bad idea at all - don't feel awkward about making it clear that you're checking things off the list.

    In a consultation you *both* get to have an agenda. I would try to just express what you have above. Maybe rewrite it a few times until it feels like something you would be happy to email to the consultant? And then you'll have practiced expressing it in a way you think will be received well by the docs.

    I do sympathise with that frustration of two steps forward and one step back. The thing to cling on to (I will remind myself again later) is that the fact that asthma is complicated with multiple variables and multiple symptoms is not you being awkward.

    I also wouldn't worry about the RBH ""I'm the least bad of their cases"" aspect. Well - I *would* worry about it, because that's my nature, but we shouldn't worry about it. Gatekeeping medical services is not your responsibility! All you can do is keep your end of the bargain. And that includes being honest about when symptoms have got worse or gone up and down.

    Could it also be an external factor? Pollen, mould, crazy temperature ups and downs, snow - there's a lot for lungs to start getting crosser about at the moment.

    hth,

    C

  • Thanks GS and Curiouser! (Also - Curiouser - I see you are new and this reply was your first post so hi and welcome! I hope you find the forum useful and supportive; I know I have).

    GS - yep, definitely, it seems to be a common thing. I remember you were changing GPs so I hope this happens less with the new ones; I am comfortable with my GP now and don't worry about expressing myself when seeing him so hope you can develop that relationship with yours).

    Curiouser - oh you sound so much like me! Thanks for the reassurance and for reminding me of stuff I should know but like you, need reminding about like my lungs being awkward doesn't mean I am - even though I feel like it when I have to say 'actually, this has been bad' etc. I actually also hate saying that I've been struggling even though that's part of the point of seeing a consultant, and I always come out sounding too vague - so I'm *hoping* having something concrete like it affecting work will help me get my point across. It feels like he wants to help, but I just find it hard to get across my POV in a way that makes sense, so hopefully my 'list' will do...

    It's definitely external - the cold, and rushing around in it when something had already set things off. Also, once 'major' triggers (cold, infection etc) have set things off, I notice the more 'minor' ones I can deal with when things are better (scents, incense, the odd smoker, Lush shops etc) get in on the act and make it all worse. But the cold is most definitely the big one for me, and then of course I tried to ignore it and carry on rushing around as I usually do...

  • Maybe you could quantify things like how many nights you've been up, how many days off work you've had, how many jobs at home you've not being able to do etc.

    My cons didn't seem to be particularly interseted when I saw him a while ago, because I was better than I usually am lung wise, so he thought things were ok. Then he asked if I'd missed any work expecting me to say no and when I said I'd missed 8 days work in the 4 weeks since I'd last seen him he perked up a bit and started asking for more detail. So maybe if you tell them how much sleep/work/housework etc you've missed he might get a better piture of what's going on and how much of an impact missbehaving lungs are having.

    Anyway, I hope your lungs get better (although maybe they could show their naughty side for the cons (mine have a habbit of being well behaved for appoinments as they're usually nighttime party goers)) and get out of the exacerbation soon so you can get back to more normal things. And all the best for your appointment this week.

  • ooh that's a good point - thanks Lou! Some concrete numbers always go down well (I can see why, I'd want them too in their position) and PF is never a useful one for me.

    Of course, being me it's weird because I don't always know when my sleep is disturbed plus I often try to work when I shouldn't, but I will have a think and try to put a number on it.

  • Hope you are feeling better soon-although would be nice if lungs stay grumpy until weds-not for you but to let your cons see how poorly you are atm.

    I will be thinking of you on weds and hope you can sort a plan out together that will end this period of out of control lungs.

    Take care x

  • Thanks fb!

    I know what you mean - sadly my lungs seem to have a 6th sense for when they are in the presence of a doctor who wants to know how they're working and act like naughty children in front of the headmaster ('who me sir? It wasn't me, I've been working FINE, my owner just doesn't know how to use me properly'.) I am willing to bet they will manage to produce a perfectly respectable spiro and no wheeze!

    Am adding to my 'document' (and trying not to make it too long/confusing or I won't manage to follow it.)

  • I think I know how you are feeling with regards your RBH appointment this week, when I have to go for my appointments I tend to be the same, sometimes, I have to see a Professor and I get so nervious and tongue-tied but when I see another consultant I am fine.

    I do hope things improve for you soon.

  • Hi Philomela, Your lungs sound like my children when they were little - at home would be listless with a raging fever so I would take them to the doctors and the fresh air on the way would perk them up and by the time they saw the doctor they would be quite chirpy and playing with all the toys!! One time my daughter was lying in her cot moaning so I called the doctor out and just as he drove up the drive I heard a little voice saying ""I feeling better now""!!

    On a more serious note, I find that in the run up to an appt like this I spend so much time in advance thinking about it - not to mention the travelling - then the waiting around that when I do get seen I am so shattered that it is almost too much effort to explain myself in a coherent way so I know exactly where you are coming from.

    That said, however, I do think that you should write some notes and I would agree that you should quantify exactly the effect it is having on your life. I have avoided doing that until recently as it feels like I am having a rant when I am not. It is very easy not to be seen as a whole person so this is why you need to explain all this. Best wishes.

  • What everyone else suggested!! Lol :-)

    Seriously, some great advice that I can't really add to, I just wanted to say I hope it goes ok for you.

    X

  • Thanks asthmagirl! Sadly I don't seem to be any better with my consultant, who is very new (when I first met him he was still a reg). Foot in mouth disease with me is apparently status-blind...

    Thanks Angelica! Am still nervous but I also have to divide my nerves as I will be starting my first ever experiment that afternoon. (Come to think of it, am I really relying on the NHS to run on time here?!)

    Val - thanks! Yep my lungs are basically like small children, or sometimes defiant teenagers hehe. Without being a parent myself also have to say I'm amazed by the amount of noise and energy coming from small children in doctor's waiting rooms - can never work out which of them is meant to be ill. My lungs also remind me of that perennial problem when you have an intermittent computer issue, call IT support, it works fine in front of them then the whole thing crashes the moment they leave.

    My appt is at 9.45 (officially, haha) but luckily I'm staying with a friend the night before in London so I don't have a massively early start; I'm hoping this will help me sound at least somewhat coherent though I'm not counting on it.

  • Hah! I'm usually the IT support person. I have a habit of fixing computers just by looking at them. ""It honestly wasn't working when I was clicking it.. "" they say. And from now on I will bear in mind the experiences I have with my lungs and doctors.

    My bugbear is that doctors and hospital waiting rooms are somehow at the perfect temperature and humidity to optimise my breathing. I honestly think that nobody with asthma should be discharged from A&E without first going and spending 60 seconds outside and then coming back in again, to give the lungs a chance to play up properly!

    Good luck with the appointment Philomena. It can also be useful to divide your points/questions into things you absolutely must say/ask, things that it would be useful to say, and thing that would be total bonus if you did manage to ask/say them. Priority 1, 2, 3 if you like.

    If you wanted to give a sheet of paper to the doc when you get in there, that would be ok- seriously. If they don't want to read it or they want to ignore the contents and just take things on their own agenda, they'll still do that. So maybe you could print 2 copies, one for you and one for them?

    Being prepared avoids those 'doorknob' transactions - where you're halfway out the room and then you say ""oh, one last thing - is it normal to [insert very abnormal symptom or side-effect that they need to follow up] ?""

    C

  • Well, was thinking it couldn't be that bad. But no, it was actually much worse than I'd expected and though I feel ridiculous I am actually pretty upset right now.

    I tried to communicate what I said but he basically said it's not the asthma, I have it but it's not causing these issues, he's not getting anywhere with me and neither is the physio, there is no need to change anything re asthma treatment except if I want to avoid side effects I should step down the Symbicort because I don't need to be on my current dose, and implied I wasn't actually trying at all with the physio or anything else like trying not to take my inhaler as much, and they might have to just 'draw a line in the sand'. And basically didn't seem to take on board at all that recently it's really been affecting things - I did say several times it's not always like this and had been pretty good before, though realised it doesn't look like I'm improving because I only record PF and symptoms now when not so good and not wheN better. Made the mistake of mentioning the wheezy cough and he said not asthma, even though it got better with pred (and Ventolin, though I know that can have odd extra effects sometimes on other things).

    He's saying it's all upper airways. I know there was an initial diagnosis here and the physio was talking about it but I got the impression that after seeing me a few times she didn't think even if there was something there tha it was contributing to my symptoms, and anyway it was only mild as far as I was told! I also thought the breathing pattern thing was improving - it felt that way anyway! I do know I have these other issues that need dealing with, but this latest really, really does feel like it was mainly the asthma, particularly given the cold air trigger.

    Basically he was saying the only answer is more physio exercises, with the implication that I wasn't really bothering with the ones I have even though I do them every day and do try. He is going to ring my GP who knows me a bit better, but am half expecting my GP to also decide that it's justme not trying hard enough (paranoia, I know but....).

    So not only do I not have a solution but feel that my consultant no longer trusts me or will listen to what I say. Apparently the physio had emailed him sayshe wasn't getting anywhere when I said I thought it was going well because my breathing pattern felt like it was improving.

    Sorry for another rant. there are worse places to be but honestly, I don't know where this leaves me. I kind of feel like there's no point being treated there anymore if they can't sort it and don't trust me, but then will it go on my record as looking like I am uncooperative? I kind of think I will never get anywhere with anyone if a specialist centre gives up on me and says it's because I won't cooperate and they can't help me.

  • Wow! What a stressful appointment. It's hard enough when your lungs have taken against you without being made to feel that you made it happen for some unknown (but clearly devious) reason AND, now that it's happened, you're wilfully refusing to cooperate with the physio to get it sorted out. I really wish I could think of something constructive to help you, but short of sitting outside for a couple of weeks wheezing and coughing I can't think of any way to get him to acknowledge that you've got a genuine problem, remove his head from whichever orifice he's stuck it and do something to help instead of making you feel worse.

    Maybe some chocolate......?

  • Hugs to you Philomela

    Its sound like you have had a really tough morning.

    Sorry to hear that your consultant isn't wanting to help you/have any more suggestions of how to get out of this bad period of asthma.

    Is there another consultant you could talk to? Or another hospital that deals with difficult asthma that your GP could refer you to?

    Go back to your GP if you have a good one and explain how this appt has left you feeling/how much your asthma is affecting your life right now.

    Most people with the modern medicines available now should have good control of their asthma so you are controlling it rather than it controlling you. I know you are going to have acute flare ups caused by infection/triggers but MOST of the time you SHOULD be able to get on with life.

    Could you phone up your physio and talk to her about the appt with your consultant or is she agreeing with him?

    Really hope you can get it sorted as you really sound down at the moment.

    I'm sure others will be along with other suggestions x

  • Yikes P - poor you!

    That sounds like all of our worst nightmare appointments really. And it could be *any* of us.

    ""Not asthma"" is kind of a silly thing for him to say anyway, given how poorly understood asthma is at the moment.

    Probably if you pushed him on it he'd be horrified to think that he came across as suggesting that you're not doing your current exercises properly. They have no idea how to communicate sometimes.

    It also sucks that the physio has given you the impression that things were going well and then reported to him that they weren't. That is really bad practice - they can't expect you to respond to physio if they're not making it clear when you're doing what they want you to and when you're missing the mark.

    I don't know what else to say except hang in there and get to your GP asap because you need someone in your corner with you on this.

    C

  • Thanks everyone! Hve at least had something to take my mind off it a little - started fkrs experiment ever today, for my masters degree :D and finally got things to work with it - think the programs had been taking lessons from my lungs...

    Annista - I went straight to a large cookie afterwards. Not sure it helped but needed to be done.

    Re the physio - to be fair, she is lovely and she does know her stuff, and also I think I may have been over interpreting things. She did say the approach wasn't working and she'd need to have a rethink, but it seemed better last time and because she increased the time between appointments I thought that meant I was getting better, but maybe I misread it. Seems to be a lot of Chinese whispers here; I certainly had no idea it was as bad as the cons made out, but I am seeing her in a couple of weeks so can ask, I also want to know why when she wants me not to breathe too deeply, my cons is telling me that my problem is not being able to take a deep enough breath. I am really, really confused by this.

    I will also see my GP, if it's reasonable to take up an appt with this. Only thing is I'd like to be sure the cons has rung him before I go to see him, SSS this would make sense - not sure how long before that happens. As I often communicate by email, was thinking I might just email and say can I discuss this with him after the cons has rung, if that's not terrible etiquette or something - not that I care much right now.I hope my GP can retain his sceptical streak - I've had the impression he's not always convinced by their approach.

    I am wondering if it comes to it whether I can ask to be re referred to my cons at St Mary's. RBH made me choose between them and him; hopefully he wouldn't be too annoyed to take me back if it cme to it (he is the better cons but RBH had all the support things, or so I thought; I did write him a letter explaining when I discharged myself). I do have another appt with today's cons in July but am wondering what the point is really. Guess I will see what the physio says as she is the main reason for me being there.

  • I will also see my GP, if it's reasonable to take up an appt with this. Only thing is I'd like to be sure the cons has rung him before I go to see him, SSS this would make sense - not sure how long before that happens. As I often communicate by email, was thinking I might just email and say can I discuss this with him after the cons has rung, if that's not terrible etiquette or something - not that I care much right now.I hope my GP can retain his sceptical streak - I've had the impression he's not always convinced by their approach.

    I'd say you can definitely go to see your GP for this.

    However - I would go asap as well as once they've spoken. It's really important that your GP gets to feed back to the consultant how confusing you found the consultation.

    It is *always* the responsibility of the person with the information to make sure that it is communicated correctly. All the recipient can do is listen and try to represent how they've understood it so far. It seems like your consultant didn't really bother to check whether you'd understood what he meant at all.

    I'm sure your local consultant would have you back. Perhaps RBH isn't right for you. In my experience the best medical stuff happens when the person carrying out your care has an interest in you / your condition / a treatment that you're suited to. It might just be that you don't happen to align with your consultant at RBH's areas of interest. Which is RUBBISH but in the circumstances you might be better of going local. Can you talk that through with your GP?

    C

  • However - I would go asap as well as once they've spoken. It's really important that your GP gets to feed back to the consultant how confusing you found the consultation.

    Can't get appt before next Thurs but I've booked it in. I suspect my cons will have spoken to him by then but oh well. Hoping something comes out of that, though I'm not sure what really. I am still scratching my head over half of it - the more I think, the less I understand. Hence yes:

    It seems like your consultant didn't really bother to check whether you'd understood what he meant at all.

    I'm sure your local consultant would have you back. Perhaps RBH isn't right for you. In my experience the best medical stuff happens when the person carrying out your care has an interest in you / your condition / a treatment that you're suited to. It might just be that you don't happen to align with your consultant at RBH's areas of interest. Which is RUBBISH but in the circumstances you might be better of going local. Can you talk that through with your GP?

    C

    Not exactly my local, unless I get the job I'm applying for (been there with current local, done that, got the 'anxiety issues go away' label) , but I hope they would, yes - if it came to that, it would at least be someone who knows me and knows the score (he *does* think my issue is asthma though he didn't at first and he is an asthma expert) and I wouldn't have to jump through all the hoops yet again. I must look like one of those people who doesn't like the answer they get so finds another doctor to tell them what they want; I'm sure that's the opinion that some have of me given how many consultants I've seen.

    The issue here is that what this cons thinks is wrong is actually his area of expertise! He scoped me during exercise and found what I was variously told was VCD, some other upper airway issue, mild and not causing symptoms and causing the majority of my symptoms. Very, very confusing, and makes me wonder... The main thing keeping me there is the physio. She is very good, and her approach is to say that she knows the medical/technical stuff but I know my body better than her and should let her know if what she's saying just doesn't make sense given this - I wish the cons had that attitude! I now realise I do have breathing pattern issues which need - or needed - to be sorted; I think I'm doing better than the cons says with that but the physio is certainly better than the one at my local who seemed a bit half-assed about it all and discharged me quite quickly.

  • Oh no Philomela. Lots of hugs. How rubbish to come away from an appointment like that. It doesn't seem like he's willing to work with you. He should be trying to sort this out, not dismiss it and say you're not trying hard enough. I hope you find some answers from your physio in a couple of weeks and that you continue to get the support of your GP. xxx

  • You poor thing! that sounds like an absolute nightmare - i dont think these people realise how much hope pins on these little appointments. Our whole lives are affected by these conditions, and even if they feel they cant do much to help, at least a bit of sympathy and support can play a significant role. If they cant help, we're going to walk away from the appointment feeling pretty depressed, but if they blame us too how do they expect us to cope!?! Im dreading my appointment on tuesday, i just have a really strong feeling that he's either going to be just like yours was and do nothing, or only do speech and language therapy for VCD, which if it is an issue - is a minor one (and based on the fact that i cannot find a single symptom that matched VCD and mine other than wheeze which in the late stages of an attack can be at the top of my chest and shortness of breath im not even convinced its an issue at all)

    I have no idea what i'll do if either of those happens, im literally crying just thinking about it. I dont expect a miracle cure, but i think there are things we can try that would make a real difference, (and actually i think home nebs would give me so much more freedom than i have now, and the capacity to build up my exercise tolerance and reasurance and mean earlier treatment and stuff, and i think all these effects would be immediate!) my mum keeps saying 'he's the expert' and telling me not to try and guess waht he can do,or think what things i think might help, but im so desperately scared he'll do nothing that i cant not fill my head up with ideas.

    Physio is a complicated issue. I HATE physio with a passion. I havent had a single session that has not reduced me to tears (i can usually hold it till i get out) and i spend at least an hour after every session feeling really SOB and my lungs ache, im currently having a week off physio as i was struggling so much to cope with it, its even harder when my breathing is worse, i gag coz i feel so desperate to breathe how im used to. It doesnt help that my physio has got it into her head that the ONLY issue i have is breathing too fast and too deep, although im not sure how she expects me to breathe less in my sleep (i dont know how fast i go but i know overnight in hospital i always score at least a 2 on my chart when my lungs are cross) and she has no sympathy that i find it hard. she makes me do silent breathing, and im not allowed to tense any musles to do it. I once got so frustrated that i just held my breathe - it was genuinly easier than taking these tiny little breaths that made no noise. I get 'air hunger' sooo much more than i ever used to before i started physio. And i have even ended up in hospital after trying to do my physio when i was a little bit wheezy. I know she wont listen to me when i say im finding it too hard, and i know if i stop going it will suddenly be my fault im ill. SOrry - that turned into a massive physio rant - oops! I wonder if she started leaving longer between sessions because you were progressing more slowly and she wanted you to have longer to do the exercises, so they could make more of an impact? Id deffo talk to her about what the consultant says - make it clear you ARE doing the exercises - and that you feel you've improved with regards to the dysfunctional breathing, and that what YOU felt was left were the underlying asthma issues and see what she thinks? The more people on your side against the cons the better.

    You deffo arent wasting the GPs time, he may have things that he feels he can do for you, or at the very least suggest wether he thinks its worth going to your old cons again, or write to your new cons.My sis is a GP and she has had people spend a ten min appt with a cold asking for paracetamol to be prescribed (saves them the 15p!) so i always just think of that if i feel im wasting GPs time!

    sending lots of hugs and 'you arent alone' type vibes :-)

  • oops Soph, I posted just after you did and saw the things about the physio! Thanks for the hugs - back at you, as I know you're having a rubbish time atm and as you can see from reading this thread, I can very much appreciate your worries about the appointment!

    It would seem that physios come in many, many different varieties (ugh, just remembered I have to see a musculoskeletal one tomorrow, yay - PAIN!) I've had not so good ones in the past; the current one however makes me realise what the others were lacking - and she is much easier to talk to than the cons and knows I am doing my exercises - I keep a diary to show her, which I perhaps should have shown the cons but was too fed up and confused by then. You really sound like you're having an awful time with yours! I don't know what to suggest really: I remember you said your mum is a physio (not a resp one though or you'd have said?) - does she have any opinion on what this physio is doing? I've never met a physio who doesn't cause pain or discomfort in some way, but usually they make things better not worse in the process, and I imagine it would be possible for a physio doing things *wrong* to make you worse, so you perhaps shouldn't just accept that she knows best if you really feel it's making matters worse (though I get it's hard to know what to do when your cons isn't really easy to talk to either - GP? Problem is resp physio is such a specialist area so hard for others to know what's right and wrong it seems - that's the impression I get anyway!)

    I know what you mean when they say stuff like 'don't breathe so much in your sleep'. I once had an argument with my otherwise good old cons about how I could possibly be aware of my breathing in my sleep! (I had a horrendous appt with him where he was saying maybe I was just overly aware of my breathing and I needed to forget about it and get on with my life. ggrrrrrr. He redeemed himself by prescribing Symbicort and being willing to rethink things in the next appt).

    Also re the sympathy - yep, it's always worse when they can't even muster that up and you feel like they don't care, or it's your fault anyway. That was what I felt today - I was tired and getting much more emotional than I normally do about how I want this to go away and it's been affecting my life etc and though he is normally reasonably sympathetic, this time he was just sitting there saying he can't do anything more and apparently blaming me. There was a lovely nurse doing spiro though who I remember from before - I think I must have looked a bit dead (plus my pulse was about 130 before the spiro) as when he made me come out into the corridor and do spiro again to 'prove' it was just me doing things wrong she looked worried and asked him if I was ok. That was sort of more what I was looking for lol.

  • Having now had the very best look at your asthma do you not agree with them that it is time to draw a line in the sand? You have had 3 consultants who's opinion you dont agree with and probably as many GP's. You have had every test done and repeated and they can find nothing wrong with you enough to explain your extensive, perceived illness or inability to cope regularly despite having been checked during what you consider flare ups and taking maximum medication

    Have you thought about stepping away from the message boards for a while so you are less fixated on asthma and other peoples problems, maybe getting another interest or hobby as a distraction or taking up a sport instead?

  • Having now had the very best look at your asthma do you not agree with them that it is time to draw a line in the sand? You have had 3 consultants who's opinion you dont agree with and probably as many GP's. You have had every test done and repeated and they can find nothing wrong with you enough to explain your extensive, perceived illness or inability to cope regularly despite having been checked during what you consider flare ups and taking maximum medication

    Have you thought about stepping away from the message boards for a while so you are less fixated on asthma and other peoples problems, maybe getting another interest or hobby as a distraction or taking up a sport instead?

    Good grief. This is only your second post this year, and I politely asked you to apologise for the remark you made in your first post of the year.

    I also seem to remember writing a plea for more polite posting just three weeks ago. In it, I wrote this:

    Some posts here on the boards have been really quite judgemental of late. The moderators will not tolerate this unwelcoming behaviour, as it contravenes a number of the T&Cs of posting here. Please think before you post, and if you think your post could cause offence, click ""Cancel"". Thanks.

    So, this is me not tolerating it:

    picalilly, for contravening the message board T&Cs particularly in regard to being civil in your posts, this is you first official warning. We operate a three-strike system here, and full details are in the T&Cs:

    asthma.org.uk/terms-and-con...

    Sorry for having to butt in with that; without PMs we have no other way of issuing warnings. As you were, folks.

    Steve

  • Oddly enough, no, I haven't. There might be people who consider this a 'hobby' for some odd reason: I'm not one of them, although I have enjoyed 'meeting' some of the people on here. I actually have a life and plenty of interests despite your suggestion that I have nothing better to do than hang round here and 'fixate on other people's problems', and I don't really appreciate someone who really doesn't know me suggesting that I have nothing better to do than invent illnesses or see doctors. Believe me, I have plenty of things I'd rather be doing and I was quite happy not going near any of them before all this happened.

    However, while I'm in complete agreement that many others are worse off than me, and I feel for them and really hope they can find solutions, my current symptoms - whatever they might be - are in fact interfering to some extent with me 'getting on with my life'. I would like to be able to use this board without constantly being accused of essentially having Munchausen's - although judging from another post of yours, you appear to think I'm not alone here. I'm aware that your own lung problems are very serious, and I really do wish that you'd had a better deal and hope that you catch a break soon, but this board is for EVERYONE, mild to severe. I'm not going to bother trying to defend myself by listing the details, because why should I, but I'd really appreciate, as I'm sure others would, being able to ask questions on here without feeling like a rather muddled history with doctors makes people entitled to accuse me of making it all up for some kind of odd pleasure.

  • Picalilly,

    Do you realise how patronising your post is? We are all equal on this forum, nobody is in authority or has the right to think they are.

    If you don't like reading certain topics, don't read them.

    Some of us do not have 'classic' or 'typical' asthma. We do not fit with the textbooks and the consultants do not know what to do with us. I heard a professor a few years ago saying these lung conditions should not go under one name of 'asthma' they are a spectrum of many symptoms that have been lumped under one name. Some of us are unlucky enough to have a more rare, 'atypical asthma' and therefore the medical understanding of it is more limited.

    I am getting fed up of a few individuals thinking they have the right to attack others who do not fit into 'their' idea of what should be. I have therefore reported your post Picalilly,

    Philomela, please do not think we are all so selfish to think this about you and we do understand where you are coming from.

  • My asthma isn't typical in presentation .... So to a general dr it may be confusing but when being assessed by a respiratory specialist . Who can review the testing and my presentation a diagnosis of asthma has never been doubted .

  • thats interesting that you say that Gussypoo, I thought a standard thing with any 'difficult' asthma is to question whether asthma is the correct/only diagnosis. My consultant did a lot of different tests (which did point to asthma as it happens) to see if there was something else going on, and now whilst he says that i clearly do have asthma he is wondering if something else is going on as well to make my asthma more serious. Did you just mean they had tested and ruled out other stuff?

    picalily - i think that if thats how you feel (and you are entitled to your opinion) i think there are much nicer ways of saying it. And i dont think Philomena's cons was saying that she was making stuff up, even if it was anxiety (and im not saying in any way that it is) that is as 'real' as asthma - but yes it does require different treatment.

    edit:sorry peaksteve - didnt see your post before i replied!)

  • edit:sorry peaksteve - didnt see your post before i replied!)

    That's okay; I was probably still typing it when you started to reply - there's only a short gap between posting times.

  • It would seem that some people with atypical asthma do get to see someone who is able to diagnose fairly quickly, but from what I have read here this is certainly not always the case - there seem to be plenty of people with now confirmed asthma who took a while to get there, many of them who appear to have more severe and what my admittedly inexpert view looks like less weird than mine.

    One of the confusing things about this appointment and that I am finding with them in general is in fact the mixed messages. This consultant has said previously there is asthma, and is now still saying this but one moment that it has nothing to do with my current issues, then the next that 'winter is winter' and I should expect to struggle especially if I get an infection. A the time I was too busy focusing on his implication that I just wasn't trying, but now I think about it, it seems a little odd that one moment he's saying that my asthma is controlled and I will never need pred, and the next that I should expect flare-ups with infections! And if infections, why not cold air, which is what I think has set things off this time? Just seems odd. He also has not really explained exactly what the laryngeal issue actually is specifically, so while yes, it is a different problem that would require different treatment, it is hard to know what he's really thinking about it, particularly when the person giving the treatment ie the physio does not agree with his assessment. Completely get the need to look at other things alongside, but o good if they're not properly explained...

    Btw Lou - I missed your post earlier - so belated thanks! :)

  • Further to my thread this morning (differences in opinions) I see we are obviously NOT allowed to have different opinions.

    Why has a member been given an official warning???

    From what I can see their reply to the post wasn't rude, just didn't conform to the majority of replies on the thread.

    Are we all really so delicate that we can't accept or disregard advice and information without getting upset.

    I thought this was a board that everyone could express themselves, where we can take or leave the advice given without it being flamed.

    Honestly my 10 year old daughter shows more maturity than some on here, and no doubt I will be flamed for saying that!!!

  • I thought this was a board that everyone could express themselves, where we can take or leave the advice given without it being flamed.

    picalilly was the one doing the flaming, as had been noted before. I also quoted my own moderator warning that similar judgemental posts would not be tolerated.

    As to anything else, the T&Cs clearly state:

    At all times, the moderators' decision is final. If you disagree with a moderator's decision you can contact them via PM, or send an e-mail to webeditor@asthma.org.uk. No discussion into moderator decisions will be entered into with any member who was not the recipient of that decision.

  • I've had tests to confirm asthma and other test to asses for other causes of my symptoms ... But my diagnosis of asthma, hasn't been changed or been dismissed . Despite how weird my symptoms can be ...I fact it has had opposite effect as the dr see it as a challenge now which they would love to solve ... For me asthma is my primary diagnosis if I don't respond to treatments then yes they look at alternative causes

  • that makes sense! My cons has said that asthma (he has started using the word brittle now - not sure i understand if that makes a difference or not!?!) is my main diagnosis, but he's quite keen to look at VCD as something making my asthma worse. I think asthma by itself would be a much easier diagnosis for me, at my level of treatment it makes the next plan of action much easier (still got plenty of asthma things i could try) although quite interesting to see that atrovent can be used in treating VCD as i do find that i salbutamol doesnt sort my lungs out properly then atrovent does - although i know asthma can respond too - dont care what causes it as long as they can work out how to make it stop!!!

    out of interest (its fine if you dont want to share) but in what way are your symptoms weird - and does that affect the way you've been treated in emergencies? you said that it takes a resp specilist to see that you are deffo asthma so how does that work in A&Es? My acute symptoms tend to be fairly 'textbook' asthma - its some of my daily stuff/follow up attacks in hosp, that can be a little weirder!

  • its the same regurgitation of posts from the same people regarding their illness that is annoying some folk and acting like a red flag in their response. i believe the official response is not to openly challenge these but to report the post and reasons for concerns to the moderator..... at present still waiting for a response to my reporting i appreciate the moderators have been busy and not always online.

  • its the same regurgitation of posts from the same people regarding their illness that is annoying some folk and acting like a red flag in their response. i believe the official response is not to openly challenge these but to report the post and reasons for concerns to the moderator..... at present still waiting for a response to my reporting i appreciate the moderators have been busy and not always online.

    As long as the posts don't contravene the T&Cs of the board, there is no action for us to take. If you are annoyed by a post, there is no requirement to post a reply to it - or even to read it. Just ignore that particular thread; there are plenty of other posts to reply to.

    Of course, we look into every post that is reported, but in most cases it is not possible for us to reply to the person who reported the post because we have no PM facility. As always, you can email webeditor@asthma.org.uk if you want to discuss any report you have filed.

  • soph my reply keeps dissappearing so applogise if there is 600 post from me later

  • soph my reply keeps dissappearing so applogise if there is 600 post from me later

    no worries - im revising for an exam tommoz and lungs kept me up last night so im pretty tired - the repetition probably helps it soak in lol! :-)

  • Gussypoo,

    I get where you are coming from with repetition at times, I often skim read or skip posts for that reason.

    Reporting may be the way to go with this and for me is a far more acceptable approach.

    Separately, I didn't realise you fall into the 'atypical' group. For me, none of my recent tests show up as asthma but I was lucky to see a consultant who still kept an open mind, persevered with different treatments and didn't doubt me. (Also my GP.) The consultant I saw at a difficult asthma clinic did say I was the third person he had seen in 15 years that had similar symptoms and test results. (I do have a lower than average gas transfer result.)

    This forum has been such an eye opemer for me and has really helped me feel less isolated and that is how I wish others to feel about it, not a place of conflict.

  • (I do have a lower than average gas transfer result.)

    Sorry to pick up on a side note, but is this the thing on spirometry results sheet things that is about transfer of CO across membranes? Coz my number for that was really significantly lower than expected - i was gonna ask my cons about what that meant - but i wondered if they'd mentioned what it meant if anything to you! Thanks :-)

  • Sorry to pick up on a side note, but is this the thing on spirometry results sheet things that is about transfer of CO across membranes? Coz my number for that was really significantly lower than expected - i was gonna ask my cons about what that meant - but i wondered if they'd mentioned what it meant if anything to you! Thanks :-)

    The gas transfer isnt done in the cubicle, other things are done in there. I had all this done last week and drove the poor technician nuts asking her what each test was for hahaaa.

    For the gas transfer measurement, which was done outside of the cubicle, I had to breathe in and out through a mouthpiece attached to the computer (much bigger and different to the usual spirometry set up), which also fed in a small amount of carbon dioxide. I then had to breathe all the way out, then all the way in and hold my breath for seven seconds, before breathing normally. During that seven seconds, gas transfer is measured. It almost killed me lol.

    Hope that helps...

    Lynda

  • hi soph no i dont mind discussing if it helps and doesnt bore you.

    my asthma presents with chest pain and shortness of breath, my saturations do not drop, so no colour changes, my peak flow can drop by 50% with little effect or drop by 10 with me being very unwell with it. I dont cough much or wheeze and its not affected by allergies.

    i present o a and e when the pain gets too much when breathing in or out. its like a stitch at base of lungs and a tight band across the centre of my chest, and or when my nebuliser stops working. it can take a build of my asthma to get to this stage anything from days to weeks. When at a and e. my heart rate , respirations and blood pressure are elevated so dr's sometimes claim i have a clot on my lungs rather than asthma so do test to diagnose this. they claim my observations are elevated due to effects of the nebuliser so withhold them , this causes the problems as i know i need them. so now i ask them to assess my air entry and push for nebulisers. when results come back showing its not a clot then i get told it is my asthma. i also present with the sudden attacks where the nebulsiers dont work and i ve been well immediately before this. when at a and e with these there is never a problem. ive discused things with my consultant, who says my lung functions shows narrow airways that respond to nebilser so im definately asthmatic he also went on to describe why i present the way i do and why medication stops working.

  • Hi Soph,

    I had this result from lung tests sat in an enclosed box. I don't know much about all of those tests to be honest.

    The consultant believes some of my blood vessels are not connecting with my lungs and are instead bypassing them altogether. Interestingly, my lungs are working 30% better than an average person of my age, size etc. (I am 50.) Previous to that flare up (started 3 years ago and still trying to come out of it completely.) I was pretty fit, love walking and I wondered if this was because my lungs had to work harder to obtain normal fitness. (Just my personal idea.) I also have allergic asthma.

    I was diagnosed with asthma in my mid 20s but have never fitted the 'classic asthma' ideal. I don't wheeze, can have a non-productive cough, loose cough or no cough and have severe shortness of breath. My peak flow never reflects my symptoms so I go by my symptoms alone. (On the advice of the 2nd consultant I saw in my 30's.) Even after all of these years I do not understand why I am different.

  • It doesnt bore me - im fairly new to severe asthma, and the more i read about it the more i feel i understand and the more in control i feel.

    i get it where my peak flow can be really low and im fine, i never understood that! i usually give it quite a few go's but sometimes i really cannot get anywhere near a decent reading!

    Is high HR a symptom of asthma? i'm never sure - i tend to get tachy when my breathings bad, but wasnt sure if it was a sign that i was anxious, or to do with inhalers or summit. Some docs say that it means im working hard to breathe, but some dont even listen to my chest and tell me that high HR is just due to panic attack? (and apparently these panic attacks continue during my sleep lol!)

    it must be scary when they withold nebs, i have only had that once with a paramedic when my HR was 110 (which is my resting HR when im feeling a bit rubbishy asthma-wise). The one and only time my 02 sats really dropped - was quite relieved when they did as it meant he actually started treating me, it was really strange as he said how wheezy i sounded but that he was worried about salbutamol making my HR worse, ive had nebs when my HR was 160 before, seems to me like breathing is more important!

    JF - yeah thats the same test i had, seemed a bit strange as im usually pretty good at keeping my o2 up (apart from in my really bad attacks) but i wondered if it might explain why sometimes my co2 can go up a bit. Also i got the impression it was affected by heamoglobin and im a little bit anemic so that could be summit! my lab tech for my Lung function tests was really nice - im quite interested in how stuff works and was asking how the different tests measured stuff, he gave me a copy of my results as well coz my sis is a GP and was interested to see what they showed! we're such a cool family hehehe!

  • Coming to this rather late today after a hectic timei appreciate the moderators have been busy and not always online

    First of all, I will say that it is great to see discussion and information (such as weird symptoms and atypical presentation) which is the purpose of the forum, after all.

    On a slight aside, perhaps we have seen the same professor Asthmagirl. I think I know how you are feeling with regards your RBH appointment this week, when I have to go for my appointments I tend to be the same, sometimes, I have to see a Professor and I get so nervious and tongue-tied but when I see another consultant I am fine...

    Some good points made too about appointments and productive use of what can be a stressful time.

    However as others have mentioned too, we are all different and have our own opinions. If we don't like what someone has written, either keep reading on or reply constructively if you wish to disagree. Please maintain respect for everyone and be civil.

    As Peaksteve has said above, as moderators we are restricted without PMs in issuing warnings or to reply to any post reports. You can contact webeditor@asthma.org.uk if you have any concerns about posts in the forums.

  • Hi Philomela.

    I read a few pages of this thread (sorry I haven't been around much!). I just wanted to say my specialists have made me a basket case at times with their theories, and taking me off the inhalers, and then me getting quite sick etc.

    So I have this rare trachea thing and went to four major referral centers and back to one of the four, before getting some answers. I had surgery at Johns Hopkins, in the end. And those doctors were the only ones who really got all the details of what I had. My pulmonologist was a resident, and it was terrific, because he researched vascular rings, and told me more than anyone. Like I will always get out of breathe when I exercise, because my aorta will always be right next to my trachea, and blood vessels expand when you move around.

    Anyways, in the end my resident graduated, and now is a full fledged consultant, but he moved. Then his attending went out on medical leave at least for a while. Then the student and attending that replaced them...completely clueless! They were like ""so you had reflux surgery."" Um, no.

    So at one point I was admitted to my local hospital, and connected again with a local pulmonologist. Who I really like, has come to the conclusion that I do have asthma.

    So please don't give up hope! Also it could be that someone local could be really helpful. By the way, apparently I've coughed so much this year, that I've developed vocal cord nodules, and to treat this they have sent me for speech therapy. LOL. I feel like we have so much in common!

    Bee

  • So I have this rare trachea thing and went to four major referral centers and back to one of the four, before getting some answers.

    Bee

    Bee, just wondering, do you have tracheomalacia?

    Lynda :)

  • Hugs to you Philomena ( without squeezing too tightly!)

    I find forums a great way to cope with needing to rant outside of my family. You are the best judge of how you feel. Personally I've had many diagnoses and contradictions. Some of them i didnt like even though they are true and others i just flat out disagreed with! If your inner voice is still saying to you something isn't right be persistent.

    I have also found that I need to let things go for a bit to regroup and gather enough strength- I don't think my able bodied friends realise quite how much persistence can take out of you.

    As you will have seen from here, we aren't just 'asthma''. We are all complex beings and are more than just a pair of stroppy lungs. This can be a revellation to some consultants who like to specialise in one area only.

    Take care

    M00minMama

    Ps. I know who you mean at RBH too!

  • Interesting re gas transfer. I also had a slightly low result on at least 2 occasions; the first they were worried I had a clot which luckily I didn't. The second I asked my cons (not this one, a previous one who was good) about it and he said it wasn't significant so I'd sort of forgotten about it. I don't know where it fits in but interesting to hear others have same.

    Soph - if I'm not too late, good luck with your exam today! Judging by previous performance you will be fine, even if your lungs don't play ball.

    BeeThere - thanks! Sorry to hear you had such a journey but it does help to hear; as you'll know, it's easy to start second-guessing when you are passed from pillar to post and they alal say different things and some are dismissive or don't listen. I am beginning to think I made the wrong decision when I had to choose between 2 places, but will see...

    Moominmama - thanks! Much appreciated - I so wish we had PMs so I could confirm if it is the same person (have you seen them?) There is one who is still a reg who I saw once and actually would rather see again because he listened and seemed to get that whatever was going on might be getting in the way of normal life stuff and what I want to do; I think he'd probably get it if Ai explained why I'm particularly keen right now to sort things out. Sadly I don't think I can say 'I don't want to see my cons who I always see, can I see a reg instead?'

    I think the reason I don't like this larynx/upper airway stuff is it seems so vague and confusing. I've read about VCD, which I didn't think I had before as it always seemed to be acute attacks which I don't get anyway. But they seem to be saying it's not VCD but is something else, to do with the larynx, and it all seems very vague and fluffy and no definite treatment though I know VCD is usually speech therapy; I'm having physio but as I have said physio does not feel that is involved. I do remember a GP saying 'upper airway dysfunction? That's not very helpful, what are they going to do about it?'

  • Hi Philomela, so sorry to hear about your appt. As you know I discharged myself from there as I felt that I was not getting anywhere. I can sympathise with what you are saying and feeling. What I did when I discharged myself was to write to the consultant explaining exactly why I did not want to be seen again and how I felt. I did get a nice letter back with some measure of apology, but more importantly my letter will now be on file! I also copied my letter to my local consultant.

  • nurse furby - i asked a lot of questions too, i had a brilliant tech who explained everything he was doing all the time, he seemed to really know a lot about lung conditions too (he was accurate about a lot of stuff that i already knew so i assume he was pretty accursate througout!) All my tests were done in the box, because at my hosp they have all the equip in one, so the only difference is that sometimes the door was closed! i thought it was carbon MONoxide that they used to measure transfer? Otherwise surely if you had air trapping or summit you'd already have a lot of co2 in your lungs? And i have to say, but the end of my lung function tests i was fairly sure the tech was trying to kill me - no other explanation for how hard the tests are :-)

    philomena - my gas transfer was about 50% of predicted, the lab tech was convinced i was a smoker, and made me do the test twice when i denied it vehemently! You wished the luck during the exam (im sure it helped - so thanks!) Lungs were most displeased as the window was stuck open and its cold and snowy here. I probably annoyed everyone by doing 10 puffs through my spacer three times during the exam, although only because they dont realise how much more noisy my lungs would be than the inhaler lol! Although clearly my dept is starting to get it, as when i went to pick up the work i missed from the first year coordinator she was so appologetic about the window - really sweet given she had no way of knowing/changing it! I keep getting diagnosed VCD when im well, and then as soon as people have seen me during an acute attack im undiagnosed, Im not completely convinced i have it, although i could believe that maybe it happens sometimes during an acute attack and that wouldnt be helping matters. i think with VCD its hard as some people dont seem to understand it as a serious issue, until i researched it i didnt know that people can become dangerously hypoxic during attacks, and some people even if to have a tracheostomy with VCD, for some reason a lot of people think its a 'lesser' diagnosis than asthma. And a lot of people with VCD have asthma too and so thats only going to make attacks more dangerous and hard to treat.

  • nurse furby - i asked a lot of questions too, i had a brilliant tech who explained everything he was doing all the time, he seemed to really know a lot about lung conditions too (he was accurate about a lot of stuff that i already knew so i assume he was pretty accursate througout!) All my tests were done in the box, because at my hosp they have all the equip in one, so the only difference is that sometimes the door was closed! i thought it was carbon MONoxide that they used to measure transfer? Otherwise surely if you had air trapping or summit you'd already have a lot of co2 in your lungs? And i have to say, but the end of my lung function tests i was fairly sure the tech was trying to kill me - no other explanation for how hard the tests are :-)

    I think she was may have just been trying to get me out of the cubicle as fast as possible, I was struggling lol. She could have said carbon monoxide, she was sitting on my right side and Im completely deaf in that ear, so may have misheard her ;)

  • I think it is carbon monoxide then :-) I think the problem with lung function tests is that you have to have functioning lungs to do them! I have a friend who was doing LuFu tests and her lungs are completely useless and the machine didnt even pick up that she was breathing! I think they need to add a bit of resistance to spirometry (well i dont actually think they should) coz when my lungs are happy and i do a spiro it feels weird exhaling so hard and not having some resistance (normally very kindly supplied by my airways) to push against. I think id do better than most people if there was resistance!!!

  • Valj - thanks! I knew you hadn't been happy with them and it's helpful to know how you handled it; if it comes to it I have a better idea of how to bow out graciously. I'm not going to rush into anything but even with less severe asthma, I feel like I've reached the point where I need someone to have a rethink and at least try to do something, and it seems I have hit something of a brick wall with them - a confusing one at that!

    Soph - glad it seems exam went ok! Based on previous results we are expecting a distinction at the very least (I don't know how you do it, my brain tends to be mush when things are acting up though I do get the thing where I can focus for a shortish time if needed then kind of crash out).

    Re VCD - yes I don't think it is well understood; when you look it up it's so often dismissed as psychogenic! Which it doesn't seem to be, mostly, and RBH to be fair appear to be doing a lot of research here and don't dismiss it as psychogenic. They just haven't really explained whether I have that or something else in the same kind of area, and how it works when it's chronic and not attacks; apparently they know now that it can be chronic as well as/instead of acute but no-one has explained this whole area properly to me ie what is VCD and what is not, and how it works when it's chronic - whatever is going on with me, asthma and other things, doesn't seem to 'do' acute attacks, it's more of an up and down daily thing, whereas eg my grandfather who had asthma (my mum's side of the family is stuffed with asthmatics) could be fine a lot of the time and then suddenly have an attack.

  • I like being somewhere where poor results are not excusable because you were suffocating during the exam!!! :-) I got 80% in the Thursday exam (where my lungs behaved beautifully), most people got about 50% (we call that a first!) gonna have to wait 4 weeks to find out how i did in the one where i was dying!

    My mum put it very nicely - ""i don't care if your breathing is caused by the smooth muscles in your airways contracting, by the smooth muscles in your vocal cords contracting, or by an ingrowing toenail - as long as we can find a way to make you better it really doesn't matter"" (she then went on to mention that she cared if it was drug use or an STI that caused it but the sentiment still stands and it wouldn't be my mum without a lecture!)

    I have had a much needed few days off from my lungs - still a bit of background struggling, and i have been really struggling with muscle weakness - i assume summit to do with the pred, but no acute attacks and most importantly no hospitals!!! Only got two more days to survive before i see my consultant,and once i have a new plan i'll hopefully be able to cope with a few attacks while things are sorted (of course thats putting a lot of pressure on the appt going well, going to have a long talk with my mum who is coming with me about how much i need this to come up with some suggestions, it took her less than two hours to get my consultants home phone number, so when she goes into supermum-mode she can get stuff sorted, and she wont fall apart at the first sign that he's not going to do anything like i suspect i will)

  • I like being somewhere where poor results are not excusable because you were suffocating during the exam!!! :-) I got 80% in the Thursday exam (where my lungs behaved beautifully), most people got about 50% (we call that a first!) gonna have to wait 4 weeks to find out how i did in the one where i was dying!

    hehe normally that would be excusable, but you've set high standards by being too good in the earlier ones, even the ones where you ended up in Costa right afterwards! ;) I hope the uni are being a bit better btw as I remember you were having some issues with them getting on your case about missing things? It sounds like maybe they are being a bit better from what you said about the coordinator; also I think you said the asthma nurse yelled at them about the ambulance thing?

    (of course thats putting a lot of pressure on the appt going well, going to have a long talk with my mum who is coming with me about how much i need this to come up with some suggestions, it took her less than two hours to get my consultants home phone number, so when she goes into supermum-mode she can get stuff sorted, and she wont fall apart at the first sign that he's not going to do anything like i suspect i will)

    Mothers are good like that - and your mum is a physio so I'm guessing she knows the ins and outs of the system reasonably well. My mum is normally like that with other things but I don't like to involve her too much with all this as she tends to get freaked out by it all and ask when I can reduce medication etc - have said that would be nice but would actually quite like to get it under control first WITH medication and anything else needed before I reduce.

    The consultant on Wed decreed that if I was that bothered by the side effects I should just reduce the Symbicort to 2 puffs twice a day because I obviously don't need to be on as much as I am (despite what for me looked like a not brilliant spiro - but apparently I am doing it wrong? I know I'm not brilliant at it so this may well be the case, but nurse seemed satisfied with how I was doing it and he was prepared to accept previous results without questioning my technique). I don't think my lungs got the message that they don't need it; I hadn't expected a drop to affect things that quickly if it was going to, but while they weren't exactly settled properly before, they have been acting up more since a day after I dropped down and I am wondering if it's connected or is just more weather stuff. I am going to give it a few days more to see what happens and if it is related, and perhaps ask GP about it, but so far it would seem that this is not the best move right now. But I was hating the palpitations and shaking hands etc and thought I would at least show I'd tried to follow what they say so decided to try dropping and see what happens. THough with the side effects, if I end up taking more Ventolin because I'm on less Symbicort, not sure this will really help.

    oops rambly diversion - but best of luck with your cons appt! I do know what you mean about falling apart when you can see they're not doing anything; I was a bit like that this week, getting more and more desperate trying to show that it was really affecting me right now and not really getting a response beyond 'I can't help you any more' and 'winter is winter, you have to expect flares'. It is v hard to keep it together so crossed fingers for a plan etc and hope your mum can help you with a plan of how to tackle it.

  • hehe normally that would be excusable, but you've set high standards by being too good in the earlier ones, even the ones where you ended up in Costa right afterwards! ;) I hope the uni are being a bit better btw as I remember you were having some issues with them getting on your case about missing things? It sounds like maybe they are being a bit better from what you said about the coordinator; also I think you said the asthma nurse yelled at them about the ambulance thing?

    Its probably a good thing i cant breathe very often - without them trying to hold me back i might become a super villan and take over the world :-) Since the time when I was refused an ambulance i've had a meeting with welfare, the lady i spoke to had asthma, and a medical background, she was absolutely fuming that any ember of the security team felt they were in any kind of position to say who did and did not need an ambulance. She basically put a thing in place that said that even if i think i can survive the taxi journey, they should call 999 anyway until my asthma is more stable when we'll review that policy. She also pointed out that for each ambulance i call to the uni, at least 4 drunk people, and 3 hungover people will get an ambulance to the uni, and that if security are doing this without question then they shouldn't be questioning me. The woman who was really putting the pressure on for me to drop out has stopped emailing me, and i gather from a friend that she gave up after both my departments kept saying how exceptionally well i was doing and that if i wasnt being so proactive at keeping them informed as to whats going on they wouldnt suspect there was any problem (maths said they might question my time keeping as when im in hosp sometimes i cant get someone to drop of my answers until the morning after they are due - but thats not much of a problem) So all in all feeling much less stressed about the whole thing, there was a bit of a delay in my DSA application, but ive been approved and have my assessment after the easter hols, so fingers crossed that will help me quite a bit! And i personally suspect that its something in my building thats trigering so many attacks and therefore when i move out next year im hoping things will improve a fair amount!

    The consultant on Wed decreed that if I was that bothered by the side effects I should just reduce the Symbicort to 2 puffs twice a day because I obviously don't need to be on as much as I am (despite what for me looked like a not brilliant spiro - but apparently I am doing it wrong? I know I'm not brilliant at it so this may well be the case, but nurse seemed satisfied with how I was doing it and he was prepared to accept previous results without questioning my technique).

    I've never understood that - even if our technique is poor, we use the same technique to get our best numbers as we do when we get our bad numbers, so surely it still has internal reliability and so the numbers will represent how we are breathing!?! I personally am always too scared to mention side effects as unless the side effect is not breathing, then its better than the alternatives. Im getting some pretty tough side effects from my steroid reduction, it took me four goes to do up two buttons on my nieces dress as i physically couldnt hold my arms up for long enough - going to be togh to decide whether to mention it as i really dont want to go back up....probably will as he seems really keen to get me off the steroids so i guess he'd only increase them if he was worried there was summit significant going on!

    Im at the point where id take ridiculous quantites of meds to get me under control - dont care if its sensible or not lol! actually, id be happy to stop my uniphylinne as i dont think its helped and i dont think theres much evidence for it, but thats about it that id be *happy* to stop, and there are things i want to try. I dont know - im gonna have a long chat with my mum sometime to make sure she knows my thoughts and then if i cant cope, she can get it sorted. My mums a physio and my sis is a GP so between them theyve got it covered. Its really funny how embarrased docs get when mum says she knows they wont do something because of money, shes not angry at them as she knows its just part of the system they are in, but she gets cross if they try and make up reasons for it when the only reason is financial!

    i think i will be even more irrational as i think im getting a cold, and so i suspect the next week will involve a lot of hospitals and the idea of that really overwhelms me and i suspect i will cry and beg in my appt!!! i just cant wait till its over!

  • :( I know exactly how you're feeling and it's not good so roll on the appt then at least it will be over! Is your term over now? Mine (I'm doing a masters) finished this last week and while I love it I'm glad of the break, though have applications now; not quite sure I have the brain left to discuss my PhD proposal...

    Really glad to hear that things with the uni seem to have resolved. I guess if it is the building, you'll be better at home? Crossing fingers as then you get a bit of a break and a chance next year to stabilise things. I discovered that while it's not the only thing setting me off (current weather being main culprit right now), my old house which was a bit damp and mouldy was probably not helping; I do think I had worse continuous symptoms there and when I went back for the last time to check things and hand over my key, I'd been ok then was hacking and felt tight fairly soon after stepping through the door - really surprised as I hadn't thought it had any effect while I lived there!

    :( re the steroid side effects, probably is good to mention as I know from reading things on here that reduction can be tricky and you need to be careful with it. I mentioned the ones I'm having because while they're not that bad they are annoying at night (and I get the shaking hands and feeling just weird). And I talked to the AUK nurse who was lovely and really helpful (she said I should ring after the appt if I want to go through things so given how it went I think I might take her up on that), and she said it's not nice having side effects and I could maybe ask if I could have separate inhalers instead of Symbicort because then I wouldn't be getting as much LABA and if I needed to up the ICS part I could without upping the LABA as well. So I asked, but then just got told I was already on too much Symbicort so the solution was to cut down. Have had rather too much Ventolin today so think will probably go back up to 3 puffs fairly soon. I don't want to be on too many things but if they would sort it out without too many side effects I'd probably be ok with that.

    Know what you mean about spiro - I'd have thought the same. I am always happy to admit I'm not great at it (think I've mentioned elsewhere that I sometimes need the bronchodilator just to get sensible results) but then why didn't he question it before? It seems odd that when I'm getting ok numbers that's fine but get dragged out into the corridor to be shown I'm doing it wrong when the numbers are back down to how they were when I was there with an infection (I think, was reading upside down but looked like it). Maybe there was something I didn't see about the shape of the curve or something - he didn't really explain properly.

  • Hope things improve

  • Thanks tyber28!

    Saw GP this morning. He was a lot nicer than the cons and not exasperated with me; I told him all the reasons I particularly want to get this sorted and that I'm totally knackered and feel fairly brainless right now. I think he really does want to help and is going to have a think about what I can do. Also said yes, go back up to 3 puffs of Symbicort twice a day if it's kicking off with less, and though I wasn't 100% sure he did also seem a bit puzzled by the cons insisting steroids wouldn't help me when RBH had given them before and they helped, and I *think* was saying that he'd give them if I needed them. He also agreed with me that my breathing pattern is a lot better than it used to be.

    He also said cons had definitely confirmed asthma but there's also other stuff going on causing problems - well, I knew that. It's just that no-one seems to agree on where the asthma ends, and whether it is controlled (I'd have thought if nothing else that the presence of other stuff that hasn't been fixed and is in the same sort of area might not exactly help with asthma control, so I'm not really convinced that they can just compartmentalise it and say 'that's not a problem, let's focus on this' even if it's not the 'main' problem.)

    GP disagrees with cons on the larynx thing (this is where I find it helpful that he listens properly and knows me, because he said 'you couldn't sing properly if it were that' and I said yep, and I can sing when bad, the sound is fine but it's a lot of effort to push the air out and maintain the sound/breath - also the larynx thing would make me feel like I'm choking, but I don't get this and my symptoms tend to feel mainly below the neck).

    He thinks it's a muscular thing, because I apparently have insanely tight muscles, but in the chest not the throat - except this is really not at all common to have it there apparently - anyone heard of something like this?!

    Guess I will be asking physio a LOT of questions and hoping she can shed some light and maybe have a solution more than the cons's vague 'more exercises' with the implication I wasn't doing the existing ones. GP said I need to somehow get muscles to relax which would make sense and he will look into things, maybe yoga can help (which I am up for if I can find a decent teacher; tried it once, was meant to be mixed ability but teacher went really fast and seemed to be assuming we were all experienced). He's approaching it like a sports injury ie said it will persist unless you fix the underlying problem causing it, and not just get better with rest.

    Anyway apologies all for yet another ramble (which may well not make sense, because I am fairly brainless right now and also I don't really understand what's going on so I can't really communicate it). But honestly, it's confused.com central here! I wish it were like on Star Trek where they always find the answer to complex medical problems and have a solution by the end of the episode. But at least it's an improvement on 'it's your fault/in your head'.

  • Hi Philomela,

    I'm so glad you have an understanding and interested GP. This all sounds very interesting!!

    Have you read my interesting (but not so good) experience with the GP surgery asthma nurse? I wrote it under my 'antihistamine' topic. Any appointment is so hit and miss isn't it? I do like to come away feeling better though not worse and more stressed!

  • Hi Jac,

    I replied on there! Attempted not to rant because it reminded me that I am still pretty pissed off with my cons for being combative and confusing. GP is great - he actually had a think and connected the tight muscles, which he knew about from a shoulder injury, to the breathing and came up with some hypotheses. So gold star to him for thinking outside box and using brain; I am worried that cons on the other hand, while obviously looking at other things besides asthma, is rather more locked in to what he thinks is going on and how much each bit is contributing. Hopefully talking to the GP will have shaken up his thinking.

    I know what you mean about appts and hope you're feeling less stressed now and hopefully lungs behaving better! tbh I am still so confused about everything I don't know WHAT to think eg I know asthma triggers can overlap with VCD triggers eg scents etc, but if I have this weird chest thing, could they set that off too? I had a definite reaction today to some lavender hand cream (lavender always sets me off) which seems more like asthma (the person whose hand cream it was, once I said sorry but I think it's the scent, immediately said 'do you have asthma?' - she doesn't have it herself and isn't a medic/nurse or anything, but the flowery scents>asthma thing appears to be better known than I realised).

    I guess I'd be a lot happier if they seemed to have more of an idea how to sort whatever it is, and also if they didn't just say asthma is fine when I'm also not sure it is right now. And I am still worried that I don't seem able to communicate with my cons and that he doesn't really listen to me; whatever is going on, this doesn't bode well.

    Am seeing physio next week though and GP said to come back in a few weeks so I'll have to remember all the questions I have...

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