No diagnoses just meds thrown at me

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I have had various PEs and my severe breathlessness was always put down to this and anemia (although breathing probs started long before anemia) 

Recently (6mths ago) i was diagnised with acute bronchitis, severe wheezing and put on steroids (lots of them) and inhaler after inhaler as much as 10 puffs in one go and also nebulisers.

However I went for a Spirometry, In the waiting room, I had to relieve by taking my prescribed ten puffs as the walk to the office had left me unbearably out of breath and wheezing and coughing..settled down a little but not alot and eventually managed the spirometry which came back no COPD or asthma as my reading was 89% but I had fluctuating readings - I was told by a friend of mine I should not have taken the salbutamol ten times before the test - I should have advised them I used my reliever - but it didnt say on my appt letter refrain from taking reliever prior...there were no instructions to follow

anyway two mths on from the spirometry, I still wheeze badly worse than my mother who smokes over 30 cigs a day, Ive never smoked

I cant walk more than ten yards without severe discomfort and again Ive just been thrown another inhaler to add in to the mix..so you can see my frustration, something is causing my problems - the inhalers "Clenin and salbutamol dont work for long" and as much use a a chocolate fire guard - you can hear my chest wheeze as I walk or sit, I cant talk for long sentences and I am at a loss - My nephew was recently diagnosed asthmatic with no spirometry and no wheezing, just pains in his chest and yet I cant get a diagnosis when you can obviously hear me before I even arrive ...anyone else in the same boat ???

 

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  • Posted

    I think you need to see a pulmonologist.  You could be suffering from several different lung ailments.  I was recently diagnosed with pulmonary hypertension.  Still another lung condition rarely discussed.  The shortness of breath was tramatic before treatment.
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    • Posted

      Best my doc will do is a referral to respiratory doc..more months of waiting as there arw no appts til late sept on choose n book/nhs ..despite me asking for years (8plus)

      the breathlessness is also frightening. I Turn over in bed and that even sets it off

      But thank you..hope you stay reasonably well

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  • Posted

    Hi I am sorry to hear all this,  it must be very frustrating for you.   Have you ever had an x-ray done?   If not insist they do one.

    If nothing shows on that ask for a CT scan.   You might get nowhere with this but it is worth asking.

    The trouble is medical professionals treat us as though we are stupid or are exaggerating or are a hypochondriac!   I hope you manage to get it sorted. 

    Is there anyway you can take someone to appointments with you who can verify your symptoms?  That might help.   Good luck and let us know how you get on  Bev x

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    • Posted

      I had an xray and just says no significant change..whatever that means..I do have decreased air on one of my lungs..they assume is due to blood clots..have had three query four

      my gp was aware i have a problem as like i say you can hear me before I arrive and the rattle has been heard at home at rest..she has just retired and the new gps are useless to be honest..I dont think they read your full history .. they just like to treat you themselves and throw meds down your throat... im satisfied an older wiser gp in my practice sees sense and because of my history referred me....its just frustrating that 4mths under wet behind the ears new GPs in my practice left me with well we dont know what it is ?

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    • Posted

      Hi well there is obviously something going on there if you have decreased air in one of your lungs and you are in such a state.   X-rays don't show everything but a CT scan shows a lot more so in your place I would demand one.   Good luck.  Bev x
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  • Posted

    That does all sound very worrying and I can sense your frustration.

    Your friend is quite right, it was pointless to have a spirometry test with all that medication in your body, obviously it would obscure an accurate result.    

    I'm amazed that you've been told to use any inhaler 10 times in one go, but I've never had chronic bronchitis so I could be wrong about that.   

    You need to URGENTLY contact whoever sent you for the spirometry test, tell him/her about the amount of medication you used immediately before it and arrange for another one WITHOUT medication.    The 89% lung function certainly doesn't fit with your severe breathing problems.   I've stabilised for 3 years at around 70% lung function and my breathing issues are nowhere near as bad as yours.

    I'm not a doctor but it sounds to me as if there's a fair chance you could have quite advanced COPD.

    I wasn't aware anemia could have such a severe effect on lungs, and surely that's been treated by now anyway?

    If you live with your mother and she's been smoking heavily around you for years that can be as bad as or even worse for your lungs than if you'd been smoking yourself, because the smoke going into her lungs is presumably via a filtered cigarette, the sidestream smoke you would be inhaling is unfiltered.

    Finally, what is a PE?

    Please, go back to whoever referred you and get another referral

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    • Posted

      morning jude65855

      Was just reading about 23deedee66's respiratory illness, well it certainly must be what with the wheezing ect, i thought you might like to know that PE  also stands for pulmonary Embolisim if I've spelt it right! However yes I agree with what some of you have said! The symptoms need attending to urgently as it will eventually become worse unfortunatly Sooner the better!

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  • Posted

    Get another appointment & tell them how incapacitated you are, that you cannot finish a sentance, & that you wheeze constantly.  Is your sleeping impacted ?

    Is your ability to eat a meal impacted ?   If these 2 *quality of life* activities,

    eating & sleeping are difficult then you need a better evaluation.

    Give them a concrete complaint, they should address it !

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  • Posted

    Sorry but you need to change your doctor, this is not the way to go.  A nebuliser is only used for severe COPD you don't need all those meds.. never known anyone advised to take all that stuff..  8 puffs..no way 2 that's all... I have a friend on my page who is brilliant called Derek he has COPD and will advise you just type my name in F book...anne cumpson... 
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  • Posted

    Thank you everyone

    firstly

    PE is pulmonary embolisms for those that asked

    according to my new gp..ten puffs of salbutamol is equivalent to a nebuliser ..i only take if severe going down in puffs til I can manage with 2/4

    I wish I could take a photo of my inhaler box to show you all the dose it states I can start at and reduce too

    My anemia isnt controlled as I cannot tolerated oral iron...but yes it can cause alsorts of problems such as oxygen that circulates in blood .

    cramps etc

    Fbc ranges between 6/8.5 at 6 they transfuse blood or iron supplements ..my iron store is almost zero..and yes its being investigated as to why I run low

    Im just confused that i get we think its this...or we think its that..??? take this med..take that med.

    Come back in two weeks

    So I have asked for a referral...

    The other questions on my discussion.

    A...yes Id told both the examiner at spiro and also my new gp id taken the inhaler .. no one batted an eyelid

    B. Yes sleep etc affected...told said.GP i am knackered...my bags under my eyes would be charged for excess baggage..ha ha

    I asked for a scan...wait til youve seen resp doc

    Spiro was fluctuating....I had as.low as 75 up to 89 when the doc gave me results at surgery

    she said sounds like restrictive rather than obstructive...and you have to expect some degree of damage due to the PEs

    Ive started another brown inhaler recently clenil 2 puffs twice a day.....as a bit of effect but not the effect that I wanted.. i think we all would like to be symptom free

    Seriously tho... its been going on since 2000 only worsening since feb 2015 when I contracted bronchitis

    Im happy ive finally got a referal despite a.3mth waitin list

    So hopefully I may just get some answers

    And thank you to all that reply

    Dee

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    • Posted

      Hi Dee I hope you get some answers asap.  Has anyone mentioned a spacer to you?   They attach to your inhaler and you can absorb more of the medicine as less is lost.   The NHS can supply them so ask your doctor.   I have been told these are as close to a nebuliser as you can get..  

      Just a thought.  Bev x

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    • Posted

      Yes i have a spacer for home use....i have considered taking it out with me when I have to go out..but it doesnt fit in your pocket !!!

      Thank you Bev

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    • Posted

      You know alot about your condition Dee, very best of luck to you getting

      more solutions.   Patients with breathing issues can get so *worn out* trying to get things resolved since they are working with less oxygen in their body to begin with !  Let us know how things when you see them again,  sending positive *thoughts* your way.

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