Well I'm back to square one again ... the steroid reducation didn't work! Managed to get down to 2 tablets a day for 3 days but couldn't catch my breath, kept falling over everytime I stood up and constant headache, so I'm back up to the full dose for a week then they will start again! Had enough of this now and want to go back to work but seen as I cant even manage to walk round the supermarket I wont be able to manage work!
I had the Brochoscopy last week and it was awful. The sedation didnt take so I was awake through the whole thing. The docs said I did really well but I thought I did terribly. I felt everything and the worst bit was the lung wash. Being able to feel the saline running into my lungs I felt like I was drowning. Really dont want to go through that again! Anyway they said I dont have VCD, but they've taken some samples and biospys to check and I get the results on 2nd December back in clinic. I'm also being referred to a chronic asthma specilaist at Wythenshawe, Dr Niven, but his waiting list is apparently massive so I wont be seeing him anytime soon!
Finally had a call from my local Asthma Nurse, its only 4 weeks late! She was supposed to get in touch 48 hours after my severe attack 4 weeks ago ... its OK love I only nearly died!!!!!!! No rush!!!! Anyway shes seeing me next Tuesday to go over whats been happening to see if there is anything else she can do to ease my symptons at the minute. Better late than never I suppose.
Sorry for the moan and rant just really had enough now of being told that they don't know why I'm SOB, exhausted and voiceless. I know they have to rule things out but I'm really sick of them building up my hopes for a diagnosis only for them to then say no its not that! I have this feeling I'm going to have to undergo tests on my heart next as they've eliminated most other things now. I just know though that they will turn round and say everythings fine.
I'm sick of feeling like this and really want to go back to work and have my life back and to be able to have a normal sleeping pattern again would be amazing.
Oh MooMoo, it sounds as if you're having a really horrible time and I think that you're entitled to have a rant and a moan. Your bronchoscopy must have been a dreadful experience and I think you're really brave to have stayed still and let them get on with it - I'd have run a mile!
I had a similar experience getting off steroids and ended up cutting down by half a tablet a month so the whole thing took forever and I felt like such a failure for not being able to do such a simple thing without making a meal of it.
I can only wish you luck with your next appointment and hope that someone can give you a diagnosis and an appropriate treatment plan.
In the meantime, feel free to have a rant and moan whenever you like - if you do it here you're less likely to lose it when talking to your Asthma Nurse, GP or Consultant.
Take care.
xx
Thanks so much Annista, its nice to be able to come on here and just get it all out and off my chest (LOL so to speak!) My boyfriend is amazing but doesn't understand how I feel as he doesnt have asthma. My Dad has asthma but hes the old fashioned type of guy, the just get on with it kind, so he's not really the easiest to talk to about it all.
Everyone just keeps telling me to rest and not to worry about not being at work, but its all I can think of to be honest. I really miss being there and feel like I'm letting everyone down not being there, work load wise for my colleagues and money wise for my fella as he's working all hours to make sure we have money to pay the bills as I dont get sick pay and SSP doesnt go very far at all!
Well moo moo, you have done so well and your in same boat as me, cutting down on the steroids, i am feeling better since i had to go back up on the steroids due to cutting down to fast, this time im cutting down on one mil at a time just like you are, it looks as if its the only way after been on them for so long, cutting down in fives is not a good idea for anybody due to the withdrawal symptons that they cause. lets hope you feel better soon take care.
hi MooMoo,
i can relate (i think) to what youre going through. i am also voiceless at the moment, along with a host of other problems. theyre pretty sure with me what the problem is, its just that this illness can go for up to 11 years being symptomatic before it is actually confirmed with a biopsy (yesterday i had my 9th and 10th biopsy in 18 months (nose and vocal cords this time...)it is really annoying the way the medical professions just seem to forget about you when youre not sitting right in front of them. its so hard to just try getting on with things in between appointments, and keep thinking that maybe the next appointment will be the one they find something or have a new idea.
sorry, i realise this is a really unhelpful post. just to say that i understand, and please pm me if you need a rant and moan etc...all the best.
Rose
Oh no I can completely relate to what you're saying. I wasn't off work with mine, though think that may be because I was part time anyway and sat at a desk all day as anything more would have have wiped me out! Bt I do remember that feeling of having endless tests and always hoping for a diagnosis then being told all fine, and feeling bad that I hoped for it not to be but I just wanted some answers! Then of course being told that it was just my breathing pattern, and not being listened to...it all gets very frustrating. I had similar before with another totally unrelated problem where it took them ages to get to the bottom of it and I felt like most doctors were just dismissing it and questioning the pain, but I did get there in the end as I eventually did with the asthma diagnosis (even if they now don't quite know what to do with me re asthma!)
Also sorry to hear the bronch was awful again. I have never had biopsies taken but imagine it is not the nicest thing. PM me any time if you just want to rant, or know about any random heart tests I may have had tha they haven't tried ( they have gone down that route twice with me now and found nothing). Xx
Hi MooMoo,
Sorry to hear that you are struggling and the steroid reduction did not work as planned. Am pretty much in a similar position myself, up and down with the steroids - back up to full dose again today, after having a bad few days!
I just thought I would mention that I am a patient of Dr Niven at Wythenshawe, have been for about 8 years and I really have to say that I tink he is wonderful. He really take a great interest and his team are great. I hope an appointment becomes available with him soon and you are able to get the treatment and care you need.
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Really positive respiratory review
New to biologics - don't feel particularly well.
I feel like a fraud.
