? not asthma diagnosis or maybe atypical *rant alert*

Aargh, saw resp. consultant finally for the first time. Conclusion was on a lot of meds (never) but with no allergies on IgE blood test/spirometry good/no A&E etc either atypical asthma or something else ? dysfunctional breathing. Anyway, have to keep another peak flow and go for bronchial provocation aka methacholine challenge.

Also, had callback from ENT after saw GP Friday re painkillers and ? infection after op. Had problems with documentation i.e. discharge letter incorrect GP address etc. Have to go back and see them & extend sick leave.

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  • TJ, you have my sympathy - this sounds pretty much what my cons said though she waited for second appt to talk about 'dysfunctional breathing'. So frustrating I know, hope the methacholine challenge throws something up (I've never had one...so much for 'you've had all the tests'). Are they keeping you on the meds or do they think they're not doing anything? My cons is very anti-unnecessary meds.

    Hope you get ENT sorted out as well, sounds not great and also confusing.

    Feel free to PM me any time if you want - as you know I'm in similar place to you though at least don't have ENT issues to deal with. xx

  • hope you can get it sorted quickly sweetie and they can get to bottom of it.

    thinking of you

    snowy xx

  • Thanks peeps,

    Have an appt to see him again in 2ish months after test, he did say something about it's not done very often? waiting for that appt to come in post. I think it's to check for definite about allergies & histamine response? as IgE blood test showed nothing. He did say he didn't want to change anything for now.

    So alongside inhalers etc on painkillers & antibs (they're red smarties!) after sinus/septoplasty op. At least no pred too, lungs settled down for now typically just before appt. Hopefully ENT surgeon doesn't need to do anything else when I see them Friday. Never had so many appts before this year :(

    Philomena, hope we both get answers soon. He did ask a couple of times did it panic/worry me?!

  • Ah, their favourite thing for odd cases like us - did he ask you if you were stressed as well? I can never convince mine that stress is probably not really contributing that much given that previously I have been under massive stress and not reacted this way.

    Also typical lungs settle down for appt - it's like they know! I wish my cons could see me at my worst but appts are always at the time of day when lungs are relatively good.

    Glad you avoided pred anyway and hope you can avoid further ENT involvement.

  • Hi TJ,

    I sympathise with you. I have just gone through every test in the last 12 months(including the bronchial provocation test) and came back with nothing obvious showing asthma (did show something else separate to my variable symptoms) but have been diagnosed with atypical asthma after responding well to low dose pred (on current 12 week course).

    I rang AUK nurses for info on atypical asthma and the nurse I spoke to said other than the cough variant type it is so rare they don't have any info on it. I don't find it fun being an 'odd' one!!

    Jac xx

  • Guess I'm wondering how reliable is spirometry esp as lungs were behaving at the time. Have anyone else had this? Also puzzled by IgE blood test showing normal total levels as think it in the past came up higher when normal for a particular food allergy check? Philomena, he didn't ask about stress

  • I think asthmatics can have normal spirometry when not symptomatic, so if lungs were behaving when you had the tests it doesn't necessarily mean you don't have asthma.

    I've also been wondering about the spirometry - last year when I had it think it was normal - better than normal in fact, probably because of all the singing - but from what I remember lungs were ok then (cons didn't actually ask me how I'd felt on the day of the test, he just decided that it meant not asthma). This time I had to do the tests twice because the first lot came out so weird, and the second lot were apparently 'variable' but cons doesn't think this is significant and is basically ignoring them - think she just thinks I'm rubbish at doing them which I am these days, but the physiologist went to a lot of effort to get sensible results out of me the second time!

    Just wondering though, is your PF around what's predicted for you or is it higher? Just wondering as I always come out above predicted when things are behaving and if I got what was predicted for me on these tests that would actually be a subnormal result for me, but they don't seem to take that into account, they just say normal if you achieve predicted.

  • Philomela,

    I think what could be 'normal' for us is relevant. I was told my lungs are functioning at 30% better than someone my age and size. I put that down to my level of fitness before my current flare up as I walked everywhere (and live in a hilly town) and was walking 8 - 9 miles for leisure with friends until all of a sudden I couldn't walk more than 10 mins slowly and then needing to sit down for 30 - 45 mins to recover.

    Jac xx

  • Thanks Philomena, JF and B.

    My best peakflow is 500 and predicted 450. Don't know if they checked it @ appt but I did say what it has been as did GP referral letter (200 @ worst in Jan/Feb, 400-450 when Atrovent added and now 320 - 400ish). Always been told classic asthma with peak flow variability & generally atopic with hayfever... (but now not on total IgE blood test?!), still have to do another peak flow diary while waiting for test until next cons appt. Also like singing on a very amateur basis.

    Apparently, I've little or no variability with spirometry and results are good. Not sure what all the results mean but had FVC/expected FVC 112% & FEV!/FVC 79% on 1st ever spirometry recently @ GP practice?

    JF, also found in the last few months exercise tolerance and fitness has gone through the floor i.e. a short daily cycle on the flat can take longer some days as can walking short distances e.g. max a mile or two. Not had reversibility as on a lot of medication & no obstruction.

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