Hey all.
I’m in need of a bit of advice and I think my question is well placed here given all of your experiences.
I’m terribly allergic to lots of things and have been under immunology for many years and they do a great job of managing my allergies. This year, I developed a serious case of breathlessness and was relying on Ventolin a lot. It would come on quite suddenly and leave me quite tired afterwards. The GP started me on Clenil (I’ve used this in the past) and referred me to my very lovely asthma nurse.
Fast forward 2 months and I’m cured! I stupidly stopped the Clenil (I really should know better!) and within a month the breathlessness came back with a vengeance (when we had that ridiculous hot weather). The breathlessness attacks would leave me absolutely exhausted (heavy limbs, slurred speech, the lot!) and wiped out for sometimes days on end- it was pretty horrendous. At this time my peak flow would drop to around 320 (PB = 490). Clenil was then switched to SERETIDE.
I was referred for a private diagnosis whilst awaiting my NHS referral and the doctor unfortunately would not listen to the full story and my history of allergies and told me to stop my medications and decided it was anxiety. His deciding factor was my lack of wheeze (I haven’t wheezed since starting montelukast a year ago, prior to that I wheezed every night). I’m literally the happiest person in the world, there’s not an ounce of stress in my life and I don’t feel anxious or depressed in any way- to which my GP also agrees that’s it’s not anxiety or stress related. Three days after stopping the meds, I deteriorated and was back on them along with a course of pred.
I’ve just had my NHS spriometry test and it came back in the normal range and am still awaiting an appointment with the respiratory consultant.
I know that my situation is not uncommon and I’ve read a lot of people here commenting on similar battles. I guess I’m just looking for some advice with regards to what I should do next. I just want a firm diagnosis and for me to never have an experience like this summer again.
Thank you in advance
Oh my goodness. Do doctors not know by now that not all asthmatics wheeze?! And how irresponsible to tell you to stop your medications. And what is it with doctors dismissing symptoms as anxiety? My dad was told he was anxious when he presented with symptoms, in fact he’d had a heart attack and had a quadruple heart bypass. I went to my doctor, explained my symptoms, I was told it’s anxiety. Weeks and weeks later, I collapsed, it turned out to be an infection which by that time had spread and required surgery (under general anaesthetic) I really don’t know what it is with the doctors and anxiety thing. Do they think we’re imagining everything. Anxiety does make things worse, I know when I’m anxious I can get nauseous or seriously short of breath. But even if it is ‘only’ anxiety the symptoms are still real. Sorry I forgot what your original question was ☺️
Thank you for understanding. I don’t think I really had a question 🙈
Your experience sounds awful, I’m happy to hear that you’re passed it and recovered (I hope?)
My frustration now is that every doctor I see, looks back at my notes and that letter with my private diagnosis is there and I have to re-tell my story and reassure another person that it’s not anxiety, which is reeeallyyyyt frustrating. Luckily I’m a calm person which helps but it’s tiring. Another thing that I’m battling with is that several doctors have asked me whether I’m trying to conceive (because of my age) and try to talk me into thinking that I’m anxious because I’m 32 and do not have children yet. It really does make me chuckle! I don’t have children because I’ve not been ready to have one yet.
Anyway, enough of me moaning 🙈😂
You’re not moaning. Sometimes it just helps to share these things. And yes, I am pretty much recovered from that thanks 👍
I decided a few years ago that some doctors prefer reading notes to actually talking, and listening to patients.
Recently I had to go to hospital for urgent surgery (not related to asthma) and one of the doctors was going through the list of my illnesses and said "You have depression" as a statement. I actually laughed out loud in spite of the pain I was in. The last time I had depression was post-natal despression over 30 years ago! The problem is that if you don't have an illness which is written in your notes and they think you have they can easily miss a serious diagnosis. I include mental health illness here as I know that too can be serious. After a few days and a CT scan they realised that they needed to operate, which they did successfully.
At the time I was too ill to think about getting it changed but I understand that there is a mechanism for getting incorrect information changed on your notes.
That’s really interesting that you stated that because now that you say it, I can think back to many times that dr’s have jumped to conclusions based on “notes.”
Once I have a firm diagnosis, I will certainly be looking to get that misdiagnosis off my file because I can foresee that every time I have an issue with my breathing, I’ll have a battle on my hands convincing the doctor that I’m seeing that it’s not hyperventilation.
Thanks for sharing your story and for the advice