whatever next.. where to go from here :(

hey guysbeen to consultant todayyou should have seen the look on his face when we worked out i had only spent 8 days at home and the rest in costa since my last appt 2 months ago :(when i asked what the next step of my treatment was, what my options were, he shook his head. he said as one medical prof to another, what do u want me to do for u - one answer i had. KEEP ME WELL AND OUT OF COSTA. i just want my life back, you know...he says, to be honest, i am on maximum treatment as it is, so the last resort is to trial Xolair trial... yet as i am not an allergic person - normally triggered by mostly irritants rather than allergens, dont raise my hopes too high, as it may not even work :(wot then?? brompton possibly for testing and other treatments as he has no idea!!!i thought he was the specialist and me the patient/nurse not the other way round... *sigh*i feel like giving up

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Hi,

It is very disheartning when they tell you that there is nothing they can do for you and many times I feel the same as if there is no point in carrying on. The only other people who really understand are the ones with asthma themselves because until you actually experience it yourself there is no way you can understand how frightening it is and how scared you feel. I really do hope you get some sort of help and get a bit of your life back.

Take care,

luv and hugs

Helen

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My consultant told me I was proving to be very difficult to manage and perhaps I needed to stay in warmer climates. I said though that may help short term but long term I live here so I need options. So we tried herbal medicines at Gt Ormond Street.

Cos asthma can be very wearing and doctors don't have all the answers. Thank God for all they do but don't give up , We have to help them know how to help us.

Gill

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Xolair can be amazing for some people It didn't work for me but I hope it helps you Snowygirl, I can empathise with how frustrating it is to not know where the next step is

Dawn x

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thanks for all your replies guys

like i say, i just want my life back. my chest wasnt this bad until the last 14-15 months. dont know why its gone so bad??

sorry for the ranting and moaning all the time if i sound so depressing!

supposed to be goin back to work next week :S but lord only knows how long it will be before the lungs will start misbehaving again... not only work but my social life + meeting people + my boyfriend who i rarely see cos always in costa or he is working!!

i will look into the herbal remedies as well maybe they will help alongside what i am taking, wont do no harm will it i suppose, already take 4 inhalers, 24 tabs a day and home nebs and now starting injections :S

but hey others are far worse off than me, right...

hugs xxx

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Hey Snowygirl,

It all sounds horrible and I think you're fully entitled to rant and moan if you want to and it makes you feel better! Isn't that what this forum is for partly? I've done enough of it myself and I'm nowhere near being in your position.

Maybe if you end up at Royal Brompton a fresh pair of eyes would help - could you have something else along with the asthma that's not being treated because not recognised? I have a vague idea that's what's going on with me at a less severe level and is partly why no-one can work out what's going on - everything all mixed up.

I also hate it when they pull the 'what do you want us to do?' line. I'm not any kind of medical professional but have had this a couple of times and it really drives me nuts - why ask me? Firstly I'm not an expert (you obv have much more knowledge than the average patient but still - not your main area of expertise, and you're consulting him because it is his area), and secondly surely it should be obvious - I want you to fix me, and failing that control the symptoms! I guess it's not always possible, but why they ask what you want from them I don't know.

Sorry, now I'm kind of ranting, but massive sympathy/hugs even if it's not really that useful. xxx

[Annista]

Snowygirl, I'm so sorry your consultant couldn't be more helpful and I'm guessing that you feel pretty trapped and desperate now. I agree that it's a good idea to try herbal remedies to see if you can get some improvement. In fact, I'm a big believer in trying EVERYTHING (while not abandoning existing treatment, of course) because there may be something that helps and there's always the placebo effect which can produce positive results. At the worst, you might find something (maybe reflexology or massage) that improves your sense of wellbeing even if it doesn't help your asthma, which can only be a good thing.

Keep ranting and don't give up - your asthma got worse for no reason that you can identify, and it's always possible that it will improve again.

Look after yourself

love

Annie

xx

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here's hoping fresh pair of eyes will work, hey?!

as far as i know, cons hasnt mentioned any other diagnosis other than confirming brittle asthma

i have tried massage and that was good and relaxing not sure if it worked for symptoms tho :S

x x x

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hi snowy girl, what medication are you on daily? Do you have a job? What are your main triggers? Do you live alone or with people? How old are you? Please feel free to pm me the answers.

Plumie

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hi plumie

just pm you

i live with my flatmate

xx