How , Why ,What and When?

so many questions and no answers but many thanks for all messages both pm's and otherwise over the last week. Even now this is very hard to type. Support wise I could not ask for a better site of peeps than this but when you feel like there is nothing at all left how do you continue? Why can't the NHS actually tell you what they think and what can i do about it. I still can't believe that i can feel so low but really don't what to offend anyone by being negative. Can anyone tell me if it gets better. They now can't decide on an asthma diagnosis but the only time my chest felt reasonable was following a triop to a &e and nebs. Got impression at hospital when saw asthma nurse they think am making ti all up.Am on highest dose for inhalers but still pf under 80%. I give up. Have returned to work today but struggling bit now with chest. Any suggestions gratefully recieved.

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  • ((((((((((katharine)))))))))) first f i want to say how pleased i am that you haven't disappeared off in a miserable puff of smoke. i've been worried about you and so hoped you'd come back.

    re the difficuly your docs are having giving you a diagnosis: have they told you why they're finding it difficult? do you feel able to ask them and persist until you get an answer? if not, do you have a friend or family member who can support you with this and even ask on your behalf? whether or not they give you a diagnosis of asthma in the end, something clearly isn't right as you're suffering so many symptoms. i know it's kind of easier to cope with stuff if you have a label to pin it on to (and be able to learn more about your condition), but do try to remember that labels aren't necessarily going to be life-changing. i'm no medic, but in my humble opinion i'd suggest you receive asthma meds whether or not they attach hat label to your symptoms, because they clearly helped you when you went to a&e. if they work, isn't that a good enough reason to have them prescribed, even if presentation doesn't always fit exactly with the text books. after all, most of us here defy the text books (i've been told this several times myself). i know it's hard, but i think you need to getsome answers from someone, whatever they are. don't be afraid to ask - it's all about you.

    remember, honey, that we are all here for you ... even when you try to run away :o)

    hang in there.

    becky.

  • Hey Katharine

    I'm so sorry you're feeling so bad (and I know that doesn't help). I wish I could answer your questions but I'm afraid I can't.

    So, I just wanted to let you know that we care and are here for you if you need a good moan.

    I hope you get some good results soon.

    Lots of love and hugs

    David

    xxx

  • Katherine just a thought if your Drs dont believe it is all asthma then ask them what they believe it is. Also what they are going to do to help you when you have these attacks. Ask them to refer you to a chest physio and even a counselor if they think it has an psychosamatic element you still need help and support. If it isnt asthma then it could well be something more unusual ask for a referral to a difficult asthma unit. Have you looked into VCD Vocal Chord Dysfunction there is a good website if you google it which gives lots of advice and help. I hope you get somewhere soon.

  • So pleased you came back I was wondering if you were ok. i don't think that even the most 'established asthmatic' as such hasen't been told at some time by some all knowing and usually junior person that its in head or not asthma. Lou is right you need to find the energy to fight to find out what it is. Get a second opinion lots of good places about don't know much about your area but sure someone on site must live your way and can recommend someone. Know how hard it is to fight when you are feeling down but hang in there

    Den

  • Katherine, everyone doubts themselves and is doubted at some point, when you are not responding to medication that everyone is telling you should work it is difficult not to. Even recently when I went to the Brompton, having seen all my gases, spirometry etc and knowing how often I've been vented etc, I still found myself thinking 'what if they think it's all in my head'. It's the penalty we pay for not fitting the boxes or the text book descriptions.

    I know that saying that does not help or change anything, but you are not alone.

    You have a right to keep persisting until you get answers; whatever is wrong with you, asthma or not, it is clearly ruining your life at the moment. That makes it your doctors' problem as well as yours.

    Don't be afraid of taking psychotherapy or counselling if they offer it to you - it doesn't mean that you are mad or that it is all in your head. It wouldn't be normal if you weren't struggling sometimes to get your head round all of this, and counselling might help you to cope with it all. Keep talking to us too.

    Hope you get some answers soon

    Em

  • Hi Katharine,

    I have struggled with ""asthma"" since I was about 13, and it wasn't until I got really poorly two years ago (I am now 34) that I was actually ""diagnosed"" as asthmatic. I have even been rushed to see an emergency doctor who has shouted at me ""What are you breathing like that for??"" ... hello, you're the doctor... could I be asthmatic??

    Do keep on at them Katharine, its not all in your head. Having struggled for near on 19 years without a diagnosis I really do sympathise with you.

    Very best wishes,

    Nikki

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