Calling all oddbods who have asthma like probs but cons say its not asthma

Do u cough,whezze,get short of breath have sevre tightness. Then rest a while he ur not alone.

I was having breathing problems at 13 got told it was bad hayfever mild asthma treatment was nasal spray and a months course of reliver tablets. Tablets got stopped and spray continued.

Then at 19 changed gp's coz i moved to another county. Got told still asthma and started the colourful collection of inhalers. hen 2yrs ago stated up RBH they said its not asthma but did not knoow what it was. Then 2 trips later you have Bronchorea(sp?) which just mean my lungs make too much mucus so only another symptom. Now i have been sent back to my local and chest is playing up again not seeing new con til may.

LOL smiler

Edited by smiler 17/3

25 Replies

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  • Hi Smiler

    Your just want I wanted to hear tonight. I cough constantly, have periods of being short of breath and a constant tight chest. In fact at this moment in time I feel lousy. Saw chest consultant (well registrar) last Monday and apparently I don't fit the bracket at mo for asthma. So I have to do peak flow 4 x day for next 9 weeks till I go back and if am no better says he will send me for a broncoscopy. He then wanted to know how I felt about that I told him I was past caring and that I just wanted to be able to run up a flight of stairs without wanting to collapsee in a heap at the top.

    Prob is I have to get through the next 9 weeks and at mo feel rough. Have been gym but done very little. Just want to get on with life again and be normal. Have got inhalers which I use 4 hrly thorough day and used them at 9 tonight but still feel yuck although they do ease coughing a little.

    Sorry if thats all mixed up but just want to feel a little better and at mo thought at least someone on here might understand better than most as most are severe asthmatics.

    thanks for post

    katharine

  • katharine no thats find let it all out i know how i felt when i first found this site i just needed to let it all out.

    I'm still having problems with medics. I have all the asthma probs and have had these since 13 well cough and sob and used to get night whezzing. The tight chest started at 19 and then i got probs day and night.

    old docs did spiro and showed i had probs with small airways so put me on seretide. By then get up RBH and they say its not my whole world just fell apart.

  • Sounds familiar - cough, shortness or breath, chest pain but 'its not asthma'. My consultant is calling it 'Reactive Airways Disease' which seems to be a global term for anything involving irritable airways but that doesn't fit a 'proper' diagnosis. GP has been really good though, I go in, he gives me 3 or 4 different meds to try. I try each for 2 weeks and see what happens. So far 7 have been useless or given me rotten side effects, bricanyl, atrovent, pulmicort and singulaire is the current combination and it is helping. It's taken me 6 months to get this far. I'd go back to your GP and see if you can do something similar. The correct phrase to use with him is 'Can we do a therapeutic trial of XYZ'.

  • do u have any allergies?

    After my trip to ENT bloke yesterday i was surprised that he took my nasal and chest problems seriously although i cant seem to pinpoint allergy apart from aspirin and probably dustmite or polltuion.

    One of the comments i found interesting was the nasal and respiratory system are made from the same cells that react in the same way. Which i knew but he went on to say whatever nose was reacting too the lungs would also react too.

    Have you done a diary of syptoms with a pollen calender? This could pinpoint which airbourne allergens your lungs are making mucus as a response too. Also a diary of what you eat could help. It doesnt have to be a full blown anaphalatic reaction to any substance for you to have an allergy. He also said even if you dont react spectacularly to allergy tests you can get same syptoms from chronic exposure to allergens.

    Hope you get some answers soon!

  • Ok I feel I should reply to this post but if I was to write how much messing about I've had from medics it would take me all day, no joke. I've been referred from consultant to consultant for 4yrs, sometimes I've not wanted to be referred but its happened anyway nobody listens to 15yr olds in the world of medicine, I've had 10 consultants in 4yrs non of which I can say yet have actually done anything to help. Brompton profs are doing their best though and by changing the minor things, like nasal spray for runny nose, treatment for iron and B12 deficiency and anaemia, given me a nippv (ventilator) for night time, I'm actually feeling better now than I have in 4yrs. Whether I've been let down by paediatric medicine or just ended up with dodgy doctors (like this one Dr Vyas manchesteronline.co.uk/news... I don't know. Making the change over from paediatric medicine was the best thing I ever did. But I do know nobody should have to sit back and suffer and take crap medical care from consultants that haven't got a clue, nobody deserves that and good medical care is what we pay taxes for. Everyone on nhs medicine is entitled to a second opinion if they aren't happy with their treatment.

    All I can say is don't give up, and keep smiling.

    tks xxxxx

  • Thank u for ur help

    Tks looks like i've got a long battle ahead then in may this will be con number 2 at loacal level and only on my 1st specalist con.

    Brom It looks like some ENT's are seeing the big picture about thre whole resp system bout time. Just need to find a good one first.

    Caroline I will try the 'can we do a trial on xyz might get a be nearer that say what do u think of trying me on xyz.

  • smiler are you in Hertfordshire? If so why not ask to be referred to Mr stears at Barnet hosp. Thats who i saw yesterday.

  • I have kind of a similar story. It stardet out when i was around 12 year old i think, i kept having these attacks in gym class. I had one, then went to the doctor, he was like you probably overworked yourself, then i had another one, and i went to the doctor again, he told me it was hyperventilation and to breathe into a brown bag when i had these attacks. So i had another one shortly after, he told me to breathe in a brown bag, and so i did, but then my face turned purple and i fainted. I went back to the doctors and they put a bunch of wires on me, and then told me that everything was ok with me, which i later on found out was to test if there was anything abnormal with my heart. Shortly after that I moved to a different country and got a new doctor, so i went to him after having one of these attacks again, and he prescribed me a reliever. It really made a difference, but soon my exercise enduced asthma got worse and more frequent, and did not only occur during exercise, i got sick a lot and over longer periods of time, and he prescribed me advair, then a couple of months later he sent me to see an asthma specialist, and that was after sending me to a different heart doctor to see if there was anything wrong with my heart, which there wasnt. So i go to see the asthma doctor, and he does a ""blow out the candles"" lung test on me, to measure like everything, and that showed that my lung capacity was 12% lower than it was supposed to on a good day. He decided to do allergy tests on me, and then he saw a pattern in this, because i would be sick a lot in the spring and the fall, but that wasnt a virus, that was just hayfever. So i got all different kinds of medications to treat my allergies and my asthma, and here i am!

  • I'm another oddbod with asthma-like symptoms who defies a diagnosis, despite the fact that I've recently been to an online cough diagnosis site based in Hull where I have answered questions, and it said I probably have an asthmatic cough. If anyone is interested I am sure I can find the link..

    I've pretty well given up on drs these days, after a few bad experiences. I'm not on any drugs, had ventolin for a little while maybe a couple of years back, it did not do much for me anyway.

    The one major trigger for me is definitely tobacco smoke, and to some degree any kind of smoke is a problem, even incense smoke which smells nice but I cannot be around one of those things burning without starting to cough and wheeze. Feeling stressed such as if I am running late for something affects me a bit but not like smoke does. No problem with dust or animal hair or any other commonly mentioned triggers. I will cross the road to avoid anyone smoking, I am so sensitive to it, feels like some kind of chemical weapons attack to me, I've even been known to pass out in the street from the effect it has on me. I did not even get any proper help at the hospital the time I passed out. My mother smoked around me a lot as a child, she did not know how much it would end up hurting me, although as a child I had lots of chest infections, always coughing and always asked her to stop smoking around me.

    One reason I have defied diagnosis I think is when they did an asthma test about a couple of years ago I was having a better day than average so they did not get the true picture of how bad it was a lot of the time!

    I've had homeopathy and herbs and supplements, all to little effect. Been feeling desperate for some years now, would like some help (smoking asthmatics please do not reply, I do not come here to argue with you!!)

    Lesley

  • If you can find that link I would be grateful.Still don't know what triggers me off but did a clinic this morning and now chest is very tight again. I give up.

  • Here it is, it did not ask about triggers, just symptoms, still reckoned I had an asthmatic cough though. We have to be aware that this kind of site is not infallible but can be helpful for some.

    coughclinic.org.uk/

  • cough clinic

    Thank Lesley I have done the q's on that site and it says i possable have cough asthma. When i go and see my new con at loacal costas i am going to ask about being refred to the cough clinic. can't hurt try and as he deals with odd bods might hold the answer or at lest part of it. The clinic is in a nhs hospital so now with this patent chose of hospitals might get the chance to go would just need help getting there.

    K i know how u feel i am at a losse about myself i'm hoping that maybe ProfMorice might be able to help.

  • Very useful link Lesley, thanks for that. Now I know why long acting bronchodilators don't help with cough variant asthma - will go back to the GP armed with new ideas !

  • Hey Lesley, long time no c!

    U doing any better?

    I'm about 2 take a look at ur link - sounds useful, since cough is probably my most troublesome symptom!

    Shadowcat xxx

  • Hi everyone,

    I know that asthma symptoms can change over time. I started off aged two, -can't really remember forty years later - but with the wheezy type 'classical' atopic asthma symptoms, but no cough, and no shortness of breath.

    During the last two years my symptoms have changed. I rarely wheeze now, but get very SOB,- short of breath,- and an irritating cough plus always having to clear my throat. Even though I have a mixed diagnosis, -severe atopic asthma (and eczema)/brittle type 2 plus mild COPD, -my docs have said that the changes in my symptoms are still related to asthma, but not the mild COPD part of my condition.

    So I would argue that anyone who experiences a chronic cough, tightness in the chest but no wheeze, and symptoms that don't fit the standard description of asthma, push for more tests and a definitive diagnosis.

    I have very good days when I can still run a six minute mile,- for at least an overall distance of ten miles (!) and b. awful days when I wake up at 4.00am in the morning with a pf of 160, breathlessness and coughing and the start of a difficult day. Asthma is so unpredictable and so difficult to quantify in some doctors' opinion.

    So please don't give up your search, and insistence on medication to relieve symptoms. Any sort of inflammatory process needs treatment. A chronic cough is one very good example of the body trying to get rid of a perceved irritant, whether allergic in origin or other, it still needs treatment and investigation.

    Lesley, I sympathise with your story.

    I too had parents who both smoked, -full strength untipped capstan cigarettes- during my life up until my mid teens when I left home. I'm convinced the smoke made my asthma worse, and to this day am extremely sensitive to cigarette smoke.

    Mia

    xxx

  • Mia thanks that should help keep the fight going on. The trouble at the mo is i have been to RBH and the con that i saw is only intrested in normal asthma so until i see my new con not much is is happening. But i still feel ill.

  • It nice to know that there are a lot of people out there who don't have a nicely defined case of asthma.

    I have an appointment with the asthma nurses on Monday so will see if they have anything to add and I'm planning on seeing the gp tomorrow to see if there was anything in particular in the cons letter.

  • an odder oddball yet

    Hi

    Long story Im afraid will shorten as much as poss though.

    From teens I complained of breathlessness episodes, coughed all the time and wheezed, though I was only bothered about the breathlessness and didnt connect the other. I blamed it on meds for heart trouble I started around same time. No one bothered about my complaint or looked into it. Had surgery for that and developed another problem, both these being electrical faults which cause rapid erratic beats etc, the former being a rare condition, the newer one a common type.

    About ten years ago I was told I am asthmatic and given bricanyl to use as needed. I was convinced I was having allergic reaction to something but couldnt trace it, and rarely used the inhaler unless desperate. BTW I have to steer clear of anything that provokes palpitations etc,

    Three years or so ago, I had spirometry and was told Im not asthmatic and no more inhaler, and that was it. Nothing else said or done. My best pf then was 360 old scale(I found old notes). I figured milk makes me cough so eliminated that, and havent coughed as bad since, though I do still cough at times.

    A couple of months ago I had a viral infection followed by a chest one, and became breathless enough to be concerned and rang Dr who came out and put me on antibiotics and sent me to surgery after the weekend. There my GP put me on steroids, my pf was 200 new scale and should be 462 my pf then rose to 280 tops. I was given qvar preventative and told to take a puff of ventolin 4 times a day, which took me up to 350 tops. Ches, throat and xrays all clear by now.

    Bought a steam inhaler and now a humidifier which I use hygrometer with to keep it optimum level at night, as best I can. I stopped ventolin except when needed, which is once or twice a day, I take it at night to help me sleep better which is one of the two. pf hovers around 310 20 and 350 or 60 with the puffer

    So I do not know if I have asthma or not. I wheeze when breathless and also when laying down unless I have puffer. I do have some chest tightness but feel tight mainly in the back where lungs are, though Ive not heard anyone speak of this so dont know if its related. Its like spasms really.

    Currently living with mold in parts of the house, which has been classed uninhabitable, has no garden, but I do have windows open though it means I need to wear extra clothes or even a poncho, and being disabled as well as a non driver, living on a hill, I cant get out except when taken, which hubby does a couple of times a week to shop for food, when I just go in shop so not really getting fresh air or sunshine, and havent for about five years, but will move by July to a new, disability adapted bungalow with a garden.

    I am currently playing with essential oils in hopes of self help, and am rather hoping that the move will allow health to improve, as I can sit outside then in the garden. Anyway, I digress, point of all this, is I have no idea wether I am asthmatic or not and am just presuming so.

    So hello oddballs, from one who is also odd

    Carole

  • just to let you know I have been for 2nd appt at hospital and they have decided I am asthmatic. At least I know now.

  • I just might be able to deodd bod myself too:) Loacal costa con told me it is asthma. So i well have to keep fingers and toes crossed that when i go back in Nov that it stays that way i can live life better knowing its asthma. More than keep getting told its a symptom live with it. But when u try to do battle with life its just that little bit easier if cons can put a everyday name to it. Even if it's just an unbrellra one that will do to start. It will make forms and a+e that bit easier than say the long name for ""I make too much mucus."" Well i will be seeing asthma nurse soon at costas so she might be able to help me get abit more control.

    For all the other odd bods good luck and keep posting.

    LOL smiler

  • if its any help smiler I saw asthma nurse at same time. They were actually better than Dr who just changed inhaler. Nurse went back and said they wanted to add on a spacer and a course of steroids as well. I was also told to go back to asthma nurse in 2/12 or to ring in 1/12 if no different to now and they would try and bring appt forward.

    Oh well isn't life fun.

    x

  • Asthma or NOT?

    I had difficulties with a particular respiratory cons when I was admitted to costa with attack. My GP had diagnosed asthma and I had been on preventer inhalers for a while when I had bad attack whilst on routine GP appointment, he tried nebs but they did no good so an ambulance was called from the surgery. It was treated in A&E and then I was admitted to a ward for a week. On the second day the cons came to see me and started off by saying he didn't think I had asthma and shouldn't panic so much as become so reliant on inhalers. Whilst he was busy implying I had had a panic attack, I heard one of his accompanying minions whisper to him ""actually she was hypoxic when she was admitted"". At this, the cons immediately said he had to speak to someone and would be back in a moment ... needless to say he did not reappear at all.

    The following year I was referred back to him because of becoming steroid dependent and his first words to me were ""oh yes, you're the lady with difficult to control asthma"". Hmm, funny that, thought I had panic attacks rather than asthma.

    Luckily for me my GP always believed it was asthma and treated it accordingly.

  • Coughing grannie

    I just read you post and thought wooooooo sounds like our local hossie !!

    I've seen it happen to others and remember once being in resus when I went bad quick and idiot reg said shes hyperventilating thats all !!

    Pity a JUNIOR dr had the sense to do ABG's that turned out to be BAD so was promptly but on cpap by the idiot reg and moved to our NIVU !!

    Luckily its never happened since !!

  • i had a cons like that too when i was in a few weeks ago. he came along in the morning and said you're not having an attack, its just the chest infection. of course he may have been right, but he was going on about catching it from university when i've been to ill to leave the house let alone get there for the last 3 months! he was also talking about the stress of university, and i think suggesting i just panicked. wouldn't listen to the fact that i'm constanly breathless regardless of peak flow, and not wheezing. don't think he looked at my abg's from a&e either! when he took me off oxygen (which was really helping) i just decided to go home... why do they have to be so arrogant??

  • Different definitions

    When I started the whole asthma malarky I had a night cough and my lungs were producing too much mucus, but no wheeze. Fortunately for me I got very lucky with my GP and consultant (although not asthma nurse) all first time round. My cons said the reason I wasn't wheezing was I was now an adult, so my lungs are bigger/more mature/something related to being an adult now, so I was coughing instead of wheezing, but it was still asthma.

    I'm not convinced that there is a single definition of asthma. I had the same problem with my eczema/psoriasis (my skin manages to exhibit features of both). The cleverst thing a GP managed to say to me on that front was that it didn't really matter which it was, as the treatment's the same either way. I generally call it eczema as I like the word better and most people know what that is, so I say if it feels like asthma to you, call it asthma (apart from when you're with your GP) and try and see if you can be allowed to try any of the asthma treatments to see if they can improve any of your problems.

    It's also my experience that as a rough rule of thumb, any sort of doctor will only diagnose you correctly on the third time of trying (I have a lot of different sorts of problem and it generally takes an average of three different attempts, often over several visits per attempt, for a doctor (usually a GP in the end) to correctly diagnose and find a solution to it).

    I also find that a lot of consultants are very much like House on TV - they pay no attention to a single thing you've said or any symptoms you're exhibiting in front of them (and woe betide you if you either fail to show how much pain their investigation just caused you or if you show that pain when their text book says you should have done the opposite for a diagnosis of whatever they were thinking of). Instead many just seem to go on the basis of what your GP asked them to look at. However, unlike House, they don't generally end up curing you, but rather telling you that you don't really have a problem you're just in pain/can't breathe/whatever the problem was in the first place. Still, as I said before, not all of them are bad. My asthma one was actually very good, so I guess the trick is to be cynical but not give up hope entirely.

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