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Feeling confused, brain overload, advice/thoughts please so can process this info.

mylungshateme
mylungshateme
โ€ข43 Replies

Hmmm not sure where to start.. good morning and hope your all doing ok?

So as you know been struggling with new severe asthma all this year see my previous posts and hospital admission a month ago. Was under respiratory team who then ref me to severe asthma clinic had my initial appointment yesterday 1.5hrs with reg.

Basically long story short he doesn't feel it's my asthma driving my symptoms as "not typical asthma symptoms" for example never a wheeze even at worst, and constantly SOB which apparently "doesnt happen with asthma - you have an attack and you recover". And not COPD -thank god.

He then explained xrays, ct were all really good and clear although "there is no specific testing for asthma diagnosis".

He explained I was observed while waiting for hyperventilation test and my resps were 42, I said yes I've been saying for months my resp is high especially given I'd just trecked from car to other end of hospital with difficulty so couldn't breathe ๐Ÿคฃ๐Ÿ˜‚.

My hyperventilation test I have barely any c02 due to me breathing rapidly which is causing sever pins and needles and constant numbness in thumb.

Lung function test is better than expected for someone of my age, sex, and height - WOW SAY WHAT??? As I'm sat there out of breathe seriously confused at this point.. he said "your very symptomatic and I can clearly see your struggling I've just walked with you and you could barely do 300m without increased SOB"

Luckily for me I spent hours typing up my history, symptoms, triggers, concerns and questions and handed him the folder as by this point was becoming mind blown.

So basically worked through list and what I think he's said now is its NOT asthma driving it but probably do still have asthma, I have high end of normal range eosinophilic it hasn't spiked into red since 2017 - so does this mean I don't have eosinophilic asthma? (Slightly confused) So I don't have severe or uncontrolled asthma? But what he thinks I do have is severe complex end of breathing pattern disorder and basically always hyperventilating.

From today I've to stop spiriva and reduce prednisolone to 10mg for 1 wk, then to 5mg for 1 wk then have cortisol bloods and and allergy tests as allergies could also be driving this. Also he said my asthma could be ok because I've been on steroids for a year... I'm seeing him again in 3 months, in that time I should have been seen by physiotherapy and psychologist he will also ring me inbetween to check how things are.

Literally didn't sleep last night trying to digest all this. But now I feel like a fraud if not asthma ๐Ÿคฆโ€โ™€๏ธ can I still stay on this forum as your all so helpful and supportive? X

43 Replies
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Firstly, have a hug. Having any appointment with a lot to take in is really hard and so very draining (I often feel physically floored for a day or two afterwards), never mind things being turned on their heads.

I completely get the feeling like a fraud and I know others on here do too. It's a horrible feeling. It's rubbish enough when it's when you don't get the treatment you're supposed to have or when they don't understand but extra hard in this situation when you think....just....what?! I once had a consultant adamant I had VCD which made me feel like that. Even though this actually turned out to incorrect, what various people said to me at the time (including my usual local consultant) which helped a tiny bit (as much as anything was going to at any rate) was "remember we've given you this previous diagnosis/said your symptoms are because of this all along, we've given you the drugs...this isn't your fault and you're not a fraud". Like I say it doesn't help much but we can only go with what we're told at the time (and I totally would feel the same in your position).

At least reducing meds and seeing how things are might help identify issues specifically - and physio (have you seen them before?) are really good for techniques for breathing pattern issues - I've been through this a few years ago and they have generally really helped. My resting RR used to be high too - not like 42 (I reserve those levels for acute times apparently ๐Ÿ˜…) but higher than normal. But now it's probably more top end of normal (like actually probably 18 rather than it being recorded as that in hosp because they don't count it or don't want it to score ๐Ÿ™„).

The psychologist I saw for some time was also brilliant - just someone to understand living with a chronic condition and a complex one at that.

One thing that makes me a bit "huh?!" is the no wheeze thing - as we know, not all asthmatics wheeze! But I suppose it's being looked at in conjunction with other things and they're not saying not asthma, but that the asthma isn't driving your current episodes.

I do get pretty SOB with my asthma but when it's being an arse - I'm not literally sob all the time. Hopefully the breathing training (something I was also assured many many people need especially when we've had months or years of breathing issues) will at least give you some periods of respite from the constant shortness of breath.

Can you do (or eat!) something nice today to give yourself some TLC?

Thanks so much twinkly29, that has helped ๐Ÿ™‚. Its amazing how appointments are so draining it literally is like brain overload lol. I mean it's very positive my lungs are good it's just they don't function properly but with training hopefully they will ๐Ÿ™‚. No never had physiotherapy he told me a website to look at to start doing exercises as currently due to staffing there is no physio....๐Ÿคช my problem is I overthink/analysis everything and need answers/solutions to problems haha I suppose it's a control thing. But these not so helpful traits hopefully psychologist can help me with ๐Ÿ˜‚๐Ÿคฃ๐Ÿ˜† as if they dont have enough to do "teaching me how to breathe.." it sounds ridiculous how can I not know how to breathe?

But I still think all this is possibly long covid syndrome as I'm sure I had it beginning of year before it was a "big thing" but wasn't tested. last month had antibodies test which was negative but as we know doesn't really mean anything as was so long ago and not everyone produces antibodies.

Consultant on admission said its plausible and biggest side affect of long covid is dysfunctional breathing disorder but I'll see what physiotherapist thinks. Yes going to have s nice soak in bath as partner come home so he can entertain baby! Then my best friend who I trained with is coming later not seen her since jan as her ward was a covid ward now no active cases so I feel no or never before next lockdown lol. X

lifeguidehealth.org/player/...

This was recommended to me by the senior respiratory physio I saw in case that's any help. I've since passed it on to one of the resp physios at my current hosp ๐Ÿ˜….

Ahh yes this is the site he gave me!! Thanks. ๐Ÿ™‚

Ooh interesting - finally someone else who's heard of it ๐Ÿ˜…

Yes he said that's the one they work with in severe respiratory in south west anyway. ๐Ÿ™‚

Yes, yes and yes! I also had something that may or may not have been Covid back at the end of March, and haven't really breathed comfortably since. Fostair has helped a lot, but I'm sure there's a lot of breathing pattern disorder there. I've been doing Twinkly's exercises, but I'm rubbish at sticking to them. In addition, the abdominal breathing is the worst, because there simply isn't enough space in that part any longer, and attempting to breathe without using my chest as well is what causes the most discomfort. The resp nurse isn't interested in helping with self-help. Frustrating, isn't it?

Arrrrhhh it sure is ๐Ÿคฆโ€โ™€๏ธ๐Ÿ˜ฌ I've been saying to them my theory of covid as was exposed jan and feb but I wasn't tested just off sick. As testing wasn't really a thing even for healthcare staff.

Even in hospital when admitted end of aug I kept saying I think this is something to do with long covid as yes asthma was getting worse hence why ref to respiratory in nov, BUT asthma changed completely since jan/feb.

1 consultant listened to me and said "yes plausible and main symptoms are BPD" hes the first one that suggested I had an element of it in hospital.

Its mental isn't it, it just lasts forever. I've been trying a technique beginning with a "b" cant remember name and must login to do those other exercises twinkly said tomorrow.

The thing is, you get a bug which disrupts your breathing. You adapt because breathing isnโ€™t negotiable. You have to do it. So you do it the best you can.

Then you get a bit better and some days you can breathe the old way and most days you canโ€™t, so your body gets used to doing it the easier way. And you get so conscious of breathing that you forget the right way, which youโ€™ve never really learned because until now itโ€™s always been instinctive.

7 months later the bug has gone, and youโ€™re still doing it wrong and struggling, and nobody is willing/able to help stuff that canโ€™t be fixed with a pill or inhaler. Pfft.

So true!!! Its goes back to "listening to your patient" and thinking logically and outside box. I mean come on where in the middle of a global pandemic ?covid, breathing issues since, hmmm one may think long covid complications.... and work on those... but that would be too logical I guess... ๐Ÿ˜†๐Ÿคฃ๐Ÿ˜‚. But lets hope the breathing exercises help us both. ๐Ÿ™‚

Big hugs! It is the worst when consultants just talk at you and don't take in the full picture. Why is he eliminating asthma as a cause? If you do have a breathing pattern disorder it is perfectly normal to co exist with asthma, and the two can set each other off.

I am personally not a fan of spirometry as it is just a Snapshot at that moment in time and not the bigger picture. Does salbutomal help? If so then they can't really rule out asthma as a cause. As twinkly said resp physios can be super helpful. I think its perfectly normal constant asthma symptoms can cause some bad habits.

You are definitely not a fraud!

Thanks melanie1989, because my pf although can nose dive are generally good my BP is 400, 75% 300, 50% 200. Mine fluctuate between 300-380 although just before the nose dive it shoots up to 450 always has done! The no wheeze which he said asthmatics always wheeze.... ventolin does help after about 10 mins, pred helps after I think day 4 but bearing in mind I always used to have 25mg pred for 5 days until it was increased to 40mg and stayed on it since so I dont know how quick it would work now on 40mg if that makes sense?

My partner not convinced by my appointment or what consultant said as i don't need to be shielding group anymore.. also he said opposite to what I've read - he said they're not really concerned about severe asthmatics and covid as its further down in the lung causing pneumonia and seen no evidence were at increased risk.

Then he said the only issue is if on long term steroids could be an issue with covid hence why he wants to get me off them... now I find it all very conflicting as my understanding is steroids actually are now thought to be a benefit of the fight against covid and they treat an aspect of it with steroids... sorry dont mean to scare anyone on steroids really not enough is known yet about covid to properly say. I certainly wasn't worried about being on steroids and covid, if you need the devil pills you need them end off really. Sorry just thinking aloud there. Lol. ๐Ÿ˜๐Ÿ˜†

The fact he said 'all asthmatics wheeze' makes me seriously doubt his credentials, as if that is true then me and most people on here aren't asthmatic then!

He is also making some dangerous assumptions about covid as there is just not enough evidence yet. It is true that asthmatics are thought not to be as at risk as someone with cardio issues but they are very much in the vulnerable category and are still treated as such. Steroids can lower your immune system but like you I have read steroids can actually help complications against covid.. The fact salbutomal helps definetly shows an asthmatic component to your issues.

I know it is easier said than done, but I would be seeking a second opinion. Some of his statements are factually incorrect and potentially dangerous!

Thanks melanie, it does seem a bit odd It was around this point my brain was at bursting point and couldn't really take anything else in. It literally felt everything I knew or thought I knew about asthma, covid or whatever was turned on its head hence the headache and wtf feeling today ๐Ÿคฃ๐Ÿ˜‚๐Ÿคช theres more too I wasnt going to go into but may help... I was a young carer for my mum who has severe uncontrolled asthma, eosinophilic asthma vocal cord dysfunction, breathing disorder sleep apnea an the rest of it shes under 2 hospitals local and heartlands in Birmingham my consultant yesterday stated "I dont think your mums is asthma either and because you've had a difficult childhood being around hospital and breathing it could have impacted your breathing" not sure what to make of that tbh. Slightly insulting I think? I'm 37 it's only happened this year not lived with mum or been her carer since i was 18! ๐Ÿค”

I honestly have no words, that is disgusting. He cannot judge someone who is not his patient. I feel so angry for you, please get a second opinion, he sounds dangerous and at best bloody insensitive!

Sorry melanie 1989 completely missed this message. I know I was speechless I mean it's not often I'm lost for words but really gobsmacked. The more I remember about the appointment the more I think hmmm I think I'll take with pinch of salt in order to protect myself if nothing else follow advice and just monitor myself if I'm worried contact gp. I really dont want to waste anyone time with 2nd opinion they're all so busy people wait months an months for urgent appointments an I'm not urgent anymore so would waste a vital appointment for someone else. Also would not have first clue on going about getting a 2nd opinion during covid times. But if things deteriorate while reducing my meds I will ask to see someone else. X

This is affecting your quality of life though so this is definitely urgent no matter what the diagnosis. I would definitely speak to your g.p though and see what they think as there is differing opinions by health professionals going on here. To go from expecting biologics to being told its breathing pattern disorder seems extreme!

Hopefully they monitor your withdrawal from meds closely and you don't get any worse. Be kind to yourself, no matter what the diagnosis, your issues are real and you are just as entitled to anyone else for help. Hope you get to the bottom of things.

Lysistrata
LysistrataCommunity Ambassador in reply to mylungshateme

Not sure I can add anything others haven't said -other than hugs, I too have been on this rollercoaster and been told oh it's this and that and not known what to think. It is really hard, especially when everything is upended. I had breathing pattern issues at first confusing matters and they found it hard to see past them - plus I still do have weird asthma and that just adds an extra layer of confusion and aggh.

I have to say when I read your original post I was thinking ok that sounds tricky and a lot to deal with, but at least the doctor seems to be listening and be ok. Then I read your follow-up posts including this one and did think hmmm...what?! It doesn't mean he's wrong about everything but I have to say any doctor who says all asthmatics have to wheeze instantly loses a lot of trust and respect from me - especially in a severe asthma clinic!! They should know better; one symptom does not define asthma and never has, and specialist doctors should be aware of this.

Then I read this about his comments about your mum and my jaw was on the ground. Just...what?! I can't even....as Melanie said it's literally none of his business, not his place and not possible for him to comment on your mum's medical situation and question her diagnoses. She is not his patient, he's never met her and knows nothing about her, he just flat out should not be saying that.

I also think it's pretty inappropriate for a resp doctor to come out with pat pop psychology theories like that one about your childhood, with zero evidence. I have found some of them do though and it REALLY annoys me - so inappropriate and thoughtless. I once told a former consultant, without really wanting to (she kind of pushed me into having to mention it) that my dad had died about 3 years before and wow. After that she was even more sure that everything was psychosomatic and grief-related and that I just was going to hospital for attention. Even the otherwise fairly rubbish specialist hospital I saw less than a year after he died didn't try to blame everything on that.

I was pretty angry tbh and in your place I would also feel annoyed and angry about that comment made that way. It's just unnecessary and speculative. At the absolute minimum he should leave that to the psychologist when you see them who actually has more knowledge and expertise about this, can handle things sensitively and won't jump to 'easy' conclusions. Maybe mention to that the dr said this when you see the psychologist, and address why you're not happy with how it was handled?

That's awful. It's like they dont know as we dont fit into a text book scenario so try an blame it on something else but they forget your a person still feeling all these very real symptoms hanging on every word they say!

I know I dont like to knock professionals so thought keep it factual with positive points but then it didn't explain why I felt so confused and world turned upside down. So then felt well more detail needed lol.

I just didn't want to sound negative or really moany person. Its interesting a lot of asthmatics have had similar issues though even with severe clinics... I guess this is just another phase of the asthma journey ๐Ÿคฃ๐Ÿ˜‚ I know when he said about my mum if I hadn't of been wearing a mask I think my jaw would have been on floor ๐Ÿคช cant say I was expecting that lil twist!! He said at the end "I'll refer you to physiotherapy and how do you feel about a psychologist?" I said yes by what you've just said it sounds like I need it... lol. I thought omg is all this in my head? He must have read my mind and did say "i don't think it's all in your head, at severe clinic we use psychologist to see if can pick anything apart". But still just wowzers ๐Ÿคช๐Ÿ˜‚๐Ÿคฃ currently watching troll movie with 2 yr old it's weird but makes more sense than my appointment ๐Ÿคฃ๐Ÿ˜‚๐Ÿ˜†.

Lysistrata
LysistrataCommunity Ambassador in reply to mylungshateme

I think what you first described would have had me feeling that way too - but the added details definitely explain it! ughh. I have come out of clinic so many times feeling like crap because of them being insensitive I have to say, and yes they really need to be more careful about it. My 'top' comment so far (not from current cons) was 'I don't think you're mentally ill, you just have a bit of a neurotic personality...you just need to believe you're not really [physically] ill.' This was the same cons who one appt would say this kind of stuff and the next would be trying to get me on a biologic, which messed with my head even more.

If it helps, whatever HE thinks the psychologist is for, they will probably be quite helpful for you. I have seen one at my severe asthma clinic and she seems to get that a large part of any issues I have is due to past experiences (eg I get insanely nervous about appts, and it doesn't help that the current team, while better than previous ones and wanting to help, could really do with improving their communication skills). SHe's definitely helped me discuss the whole thing around feeling a fraud and doubted etc, and it hasn't been 'we think this is in your head'. I think health psychologists do usually understand all this as they work within the system and understand the realities.

Enjoy the troll movie -I think you need something weird and relaxing after that clinic. I used to try and do something after appts because I'd made the trip to the city, but my head wouldn't be in a place where I could really enjoy it after the appointment. I think a silly film and/or friends and family would have been a better idea, instead of getting weird looks for crying in an exhibition/on the train etc.

Its horrendous your left in tears and utterly in shock after an appointment I wonder if they know the impact they have on the patient. I mean it's clearly not enough to learn a new way of life with a debilitating illness is it and battling side affects and they really wonder why patients have down days??? Then you have an appointment and it takes a week to recover ๐Ÿคฆโ€โ™€๏ธ๐Ÿ˜† and you resort to the troll movie ๐Ÿ˜‚๐Ÿคฃ desperate times lol.

Big hugs hun, reading your post I empathise with how you feel but want you to be reassured.

It sounds like from what you say 1.5hrs talked a lot and not taken it all in try looking at it another way:

1)

It may feel like to you that you have been made to feel a fraud. I don't think that is what he is saying to you as he clearly acknowledged your symptoms but didn't think from tests it was as a result of asthmaThey wouldn't be asking you to come back. Dr could be better at communicating.

2)

Dr does not seem to be saying you don't have asthma so not a fraud.

It sounds like he is saying your symptoms from the tests don't seem to be as a result of asthma.

Did they do any other tests? ie ECG or EEG - suggest you see a cardiologist for example as Shortness of breath can be heart related ie heart failure.

2)

Dr taking you off medication - the medication could be interfering in the tests results like he said your asthma could be ok as on pred for a year.

He wants to see you in 3 months which is enough time for meds to come out of system and see if the other options he suggested make a difference.

It could be by coming off the meds your body reverts to true state and by then testing can compare before and after.

3)

Coming off the meds is scary and you may be scared it will get worse and maybe it will get worse and you do get admitted to hospital again but coming off the meds may help the Dr's as they get a true picture without meds masking the test results.

(Eg medication masking - I had to take metformin for PCOS but to check annually if I had any sign of diabetes had to stop the metformin for a length of time before blood tests as the metformin is also a drug used to treat diabetes so could give false reading)

Does that make sense?

Do you know what thank you LDloveslattercoffe, that makes complete sense for my brain to process and accept. Literally breaking it down in a different way. yes I get it now and can see why this is the plan of action now ๐Ÿ™‚๐Ÿฅฐ. I too used to be on metformin for PCOS ๐Ÿ™‚. Thank you for helping my poor over worked little head!

Glad I could help, it can all be a bit much.

I would suggest taking notes at the time of your visit.

Before you leave you could look at your notes and say:

"Just to be clear can I ask your thinking about doing xyz?

I have even asked the Dr. in the past to write summary before I leave.

If your not sure and they should explain the reason to you and any decent Dr. won't mind. They don't want you going away worried or feeling like that.

We put so much hope into our hospital respiratory appointments that we can often leave bemused or confused. Over the years I've seen so many different doctors and everyone has something different to say, some come out with things I've never heard before and it can really play on the mind.

I really feel for you right now as you must feel like you're back at square one, with more questions rather than the answer you expected. You prepared so well too, but even so, this isn't your fault and anyone who has just watched the BBC series The Diagnose Detetives will realise how frustrating it can be to find important answers and diagnoses for complex symptoms.

I agree that you should ask for an ECG, blood pressure check and blood tests just to rule out any cardiac anomaly. All these can be done at your GP practice, especially if you say you have a family history of such issues.

I've great appreciation for the results from physiotherapy and the exercises that they recommend. It's a shame that we don't get earlier referrals as I believe it should be as normal as prescribing an inhaler.

I wholly agree about the effects that your medication regime can have on tests, so coming off these meds will definitely give the specialist a better picture when you see them in 3 months.

Family medical history may be worth looking at, just in case this is something that someone else has had. Asking the older members of both sides of your family may give you a better idea of shared/ inherited illnesses.

All the very best.

mylungshateme
mylungshateme in reply to Poobah

Thanks, oh I'll have to watch that ๐Ÿ™‚. Funny enough I had loads of ecg's while an inpatient as they were "all over the place" the nurse said, so she got the dr I was under hourly obs for 3 days then every few hours "urgent ecg" due to respiratory rate and bp. I just put it down to salbutamol nebs an ventolin inbetween.

But to be fair even when not having ventolin respiratory rate still high. Usually my bp was always picture perfect. But is higher but not out of range but then drops low which is out of range. I've got a monitor so will start doing my bp thanks for that. My heart rate can be 130 on waking.... sats never fall below 94%. - that I've caught anyway. ๐Ÿค”

Poobah
Poobah in reply to mylungshateme

That's the trouble with asthma meds, they can affect BP, heart rate and even blood sugar levels. And of course everyone is different in how they react to meds. But as you come off some of those asthma meds you may get a clearer picture about your BP etc. If things are still erratic I would definitely try for a referral to a cardiac specialist.

mylungshateme
mylungshateme in reply to Poobah

My goodness I watched that series diagnosis detectives so interesting thanks for that. Love things like that. That's what I need entire team to tie it all up ๐Ÿคช๐Ÿคฃ๐Ÿ˜‚ I'm only a year in, some people go decades not knowing so I really can't complain at least I'm in the specialist system. ๐Ÿ™‚

That all sounds so confusing for you and quite upsetting. I donโ€™t have any expertise but one thing is 100% clear - you are not a fraud! It doesnโ€™t sound as if the doctor thought that and you have been relying on the diagnosis that you were given- which is what sensible people do! As twinkly said it sounds as if asthma may have been the starting point and then your brain and mind have been trying to protect you by, for example, increasing your breathing rate but have overdone it!

Maybe reducing the medication may help you feel better in yourself eventually.. Iโ€™m glad they are offering further help.

Please be as kind to yourself as you would be to a friend.

Good luck and big hugs!

Well mylungshateme, firstly a hug ๐Ÿค—...sounds like you need one!

secondly, you better not disappear from this forum because Iโ€™d miss you...along with the others Iโ€™m sure!

And thirdly....no wonder you have brain overload and confusion!

I have nothing of any use to say other than youโ€™re amazing and youโ€™re not a fraud!

I donโ€™t think doctors realise just what impact their words have on us sometimes do they! Especially when weโ€™ve thought and been treated for one thing for ages, then they turn things on their head!

Another hug!

Dee x

Ps...love it how you started out with โ€˜ Hmmm not sure where to start.. good morning and hope your all doing ok?โ€˜ ...when yo have so much going on in your head! Bless you! ๐Ÿ˜Š

Hey Dee, lol I literally didn't know where to start and purposely didn't post last night as needed time to try and think about it rationally and figure out which bits confused me lol. But I knew you guys would help me out today!

It is funny thinking down one route then bang something else. I honestly thought I would get a date for biologics as the last I was told I wouldn't improve until I started them! ๐Ÿคช๐Ÿ˜‚๐Ÿคฃ so mentally bit blown away lol as long as I get better it doesn't matter what label I have I've decided.

And although strange its positive I mean coming off pred is a dream in its self the thought I may one day have a nights sleep again ๐Ÿ˜๐Ÿ˜๐Ÿ˜ lose weight, skin calm down an hot flushes what more could a girl ask for?!๐Ÿ˜˜๐Ÿ˜† win win chicken dinner ๐Ÿคฃ๐Ÿ˜‚๐Ÿคช and I'm not going anywhere I so need you guys and as others have said I still have asthma just not as I thought. The next 3 months is a complete unknown so will need your wise words ๐Ÿ˜๐Ÿ™‚. Thanks so much. X

EmmaF91
EmmaF91Community Ambassador

Hi

Speaking as someone who was first told by a spec hosp โ€˜BPD, social anxiety, mild asthmaโ€™ and was made to feel a fraud (I was asymptomatic at the time), I am fully aware spec goals can be wrong sometimes ๐Ÿ˜…. I had to do the whole med wean and come back in 3 months... when I returned to follow up they panicked, admitted me and apologised for being gone wrong, and I started on MABs the next month. I had caught a chest infection just after leaving the hosp, then as โ€˜a fraudโ€™ only gone once to a&e, told to neb at home 2hrly til it cleared... 2 months later I was at the end of my tether, saw GP who sent me in to hosp. Hosp weโ€™re stuck as couldnโ€™t increase maintenance meds back (not even increase pred) so I had โ€˜plannedโ€™ iv treatment until my last appt when the spec hosp finally got to see me โ€˜badโ€™. (When I moved spec hosps I already had the diagnosis, but con still wanted to see me when issue... problem is itโ€™s a 3+hr journey so โ€˜bad but not hosp bad, and ok for train badโ€™ ๐Ÿ˜…๐Ÿ˜‚ - ended up getting a cold and managed it, tho when I did get the appt it was as cold was on the way out ๐Ÿ˜…)

This they may be thinking atm is that your symptom burden do not align with an asthma flare right now, when they saw you. Sort out the BPD (mine was the opposite to yours btw... hypoventilation ๐Ÿ˜‰๐Ÿ˜‚), and one you should feel a lot better and be able to do stuff again and two they should get a better picture of your lungs. They do think you have asthma, just when you saw them that wasnโ€™t what was causing the symptoms you had...

And ugh to the doc. He started off sounding quite good and went downhill from there ๐Ÿ˜…...

Hugs, chin up, and try to view it as a stepping stone to getting better. My BPD cleared up with exercises/practice and led to less saturation drops during flares. But then they saw my actual flares and treated those. Get on top of your BPD youโ€™ll hopefully feel less SoB and then theyโ€™ll hopefully have a better picture of whatโ€™s going on. If you stop the meds, sort the BPD and end up feeling good then probably no severe asthma, if you do all that and then still have issue/things get worse without meds then you may do, and you need the meds. Itโ€™s a diagnostic trick I think a lot of spec hosps do when things arenโ€™t clear cut.

And also hmmmmm at the COVID discussion. I heard asthma generally is less risk than they thought, but non-e asthma (esp those with IgG deficiency component or prone to bacterial infections) and/or very unstable asthma they are still unsure about. They think the ICS in inhalers helps reduce COVID issues, but again havenโ€™t heard much about how long term pred affects it...

Hope youโ€™re feeling ok today. You arenโ€™t a fraud, keep your local team in the loop (they know how it is rather than seeing a snapshot), get on top of BPD and possibly get your heart looked into if the GP thinks itโ€™s warranted. Good luck!

Ps he has absolutely no right to comment on your mumโ€™s situation, as he never met her, and was under spec hosps herself. He knows nothing about her, so saying he thinks all her docs were wrong is not really professional. And I hate it when docs try to psychoanalyse issues... as you did it was a long time ago now and itโ€™s not his place. If I remember correctly your down to see psych and physio, both should be really good and helpful, and psych should be able to clear up that itโ€™s not that leading things ๐Ÿคฆโ€โ™€๏ธ. He is a resp doc not a psych doc, and he would get very annoyed if psych blamed all their patients on a resp condition without any testing/appts etc... Iโ€™d try to ignore what he said there...

Thanks emma as per you speak so much sense! Its a shame it's because you've been through so much on your journey but its lucky for us as your so supportive with your knowledge and experience. So thanks. It makes sense by dropping meds we can really see what's going on also like you say if I can sort the BPD out that's going to help so much regardless of anything else.

Yea I'm not sure what all that was about him saying that every respiratory specialist con my mum has ever seen over 61 years has been wrong...? ๐Ÿ˜‚๐Ÿคฃ. Very strange lol he's clearly a very talented reg.

How are you doing anyway are you back home? ๐Ÿ™‚

EmmaF91
EmmaF91Community Ambassador in reply to mylungshateme

Youre welcome. May as well use the experiences to help others rather than say nothing, let it fester in myself and watch someone else struggle ๐Ÿ˜….

๐Ÿคž๐Ÿป๐Ÿคž๐Ÿปyouโ€™ll get on top of things and not need the all meds, but if you do they will change their minds. Either way loosing the BPD should help you feel better end give you a better QoL!

Yeah... ๐Ÿคฆโ€โ™€๏ธ๐Ÿคฆโ€โ™€๏ธ๐Ÿคฆโ€โ™€๏ธ

Iโ€™m ok thanks. Was discharged last Saturday, but on 2 nebs/day ๐Ÿ™„๐Ÿคฆโ€โ™€๏ธ. Now down to 1 a day, 30 pred and a plan to start kenalog injections next weekend I think (appt pending). I have thought for years I donโ€™t absorb pred properly (esp with IBD/crohns of other bowel issues running in my family), and con also thought this in Jan/AN supports it and said would explain things, so hoping the kenalog does the trick ๐Ÿคž๐Ÿป๐Ÿคž๐Ÿป. But on the whole Iโ€™m feeling better than I was in discharge so ๐ŸŽ‰๐ŸŽ‰

A doctor gives an opinion a doctor is only a human being

But if he has put something like your a fraud into your head he is an insensitive idiot.

So my dear stick two fingers up smile

All the best

๐Ÿ˜‚๐Ÿคฃ๐Ÿคชlove it made me giggle. ๐Ÿ™‚

Hi again mylungshateme. How frustrating, I was really hoping you'd have better news. Congrats for getting through that appointment, it sounds like a real headbanger. Can you take someone with you for back up next time? You are not a fraud. From my experience when asthma is controlled other things fall into place. Step back and do some things for yourself this weekend. Take care & let us know how you are doing xxx

Thanks jollygood. It's so annoying as with covid cant have anyone with you but my next one in 3 months I'm really going to try have an advocate with me for support. Xx

Hey is that your NHS trust that are saying you can't have anyone with you?

Here in Newcastle all our hospitals are allowing one person to attend with the patient - in last month I went with my mum to the respiratory clinic.

There were signs everywhere stating only the patient allowed in appointment no visitors. But I did see some people had a +1 with them in waiting room. I'll def take my partner or friend next time even if they have to stay in waiting room I'll try blag it. Lol. That's interesting about Newcastle. Bristol are strict even when inpatient only one visitor per day and really only people you live with which I think is good sticking in your bubble. However you could go outside and see visitors.

Sorry to hear about all you've gone through, I can't really add to the advice everyone else has given except to say I've seen many asthma consultants over the years and as one of their nursing colleagues said to me "they all have their own opinions, you just do what works for you" as you really do tend to get lots of different variations - I've had everything from one saying he can forsee a day where I won't need any asthma medication at all (bizarre since I'm lifelong asthmatic on Step 4 treatment!) to another who also went down the VCD route which wasted two years of ENT's time as they say I don't have it. I also think I had Covid in March as my asthma has been awful since then - frustratingly there are no actual signs of this (antibody test in July was negative, but was that too long after?) apart from increasing breathlessness/tight chest and I think many people with asthma have been affected by Covid that haven't been picked up on yet. Just take one day at a time is all I can say and keep trying to find the right treatment for you.

mylungshateme
mylungshateme in reply to ccccc

Thanks ccccc, it's so reassuring to know I'm not alone in this or the only one battling with symptoms and a diagnosis. What a journey asthma is hey?!

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