Feeling demoralised.

[Abc64]

Hello all.

Saw consultant for the first time. His manner upset me. Not sure still if it’s asthma or something else. I felt like I wasn’t believed. I know that I have breathing problems. I think that the tests are inconclusive. I was told the results of my ct are different to the tests I had today. I was told I have 2 conditions I didn’t know about, which is good, but the one thing that I want to know, they can’t tell me yet. The nurse I saw was very kind and helpful.

Had an ecg today. For echo and sleep apnoea test in the future. Has anyone else had these problems with diagnosis, or is it just me. Dr is very thorough on the up side. Perhaps it’s just me getting emotional. I feel tired all of the time, which won’t help.

[Rosalada]

Hello Abc64. Sorry to hear your are feeling a bit fed up with things, I understand exactly how you feel. I have had a very similar experience not that it will make you feel any better knowing that. It has been over 18mths since I since my GP referred me to a Consultant, I won't bore you with the details but I have had X-Rays, Two CT Scans two Spirometry tests, and MRI scan an Echocardiogram and a Stress Excerise test, blood tests and a Histamine Challenge test all the results came back at the bottom end of normal except heart scan which showed good pumping action and my lung tissue is very healthy.

He said I definitely do not have COPD and that I probably have Asthma when I asked why probably he said well the spirometry showed improved results after sambutemal was administered, but Asthma is a strange animal particularly when seen in older patients, (a that point I could have hit him) he prescribed Forstair and Ventalin so I nolonger wheeze or cough but I am still extremely breathless, even after completing a course on learning how to breath correctly (based on nasal belly breathing and having a controlled pause) I have also had email contact with Asthma UK (I live in Spain for most of the year) but still can do very little without fighting for my breath, everyone agrees something is not quite right but no one seems to know how to find what's not quite right and I now feel no one is particularly interested either.

Yes it does get me down, I try to think positive, that I am so much better off than some people who have to take oxygen and do have lung tissue problems, perhaps the Consultants suffer from patient fatigue and subconsciously think the same way but it is waring and it is upsetting and it is depressing because it affects everything I do as yet I haven't managed to come to terms with this is how it's going to be so just get on with it perhaps I never will but I am not going to just give up on it without a fight.

Sorry again I have no answer for you and I do hope you get a proper diagnosis perhaps it will help to know that you are not on your own and that there are a lot of people on this forum that will have your back as they say, Good Luck🍀🍀

[Spikedog66]

Chin up and try and relax tell yourself I can get through this whatever, I know its hard was messed about like you. Asthma from early age and now copd was recently told no asthma but heart issue but no treatment. You didn't say what treatment you were given or when you go back. All I can say is ask chest nurse at gp they are usually very good know their stuff. Do the best you can carry on with your life everyone gets down its they way society is today even without illness. My wishes are with you please let me know how you get on chat on here if you need some support very interesting helpful website.😊

[Abc64 in reply to Spikedog66]

Thank you.

I have fostair 4 puffs twice a day. Braltus in the morning and montelukast at night. Also daily anti histermine. I was told that I have a heart murmur. I had an ecg. I will be having an echo and a sleep apnoea test. He said I shouldn’t have been given the braltus without a diagnosis. I said that I didn’t think it was working, but after about 6 weeks, I stated to feel an improvement. I was told it might be a placebo effect, where I think it’s doing me some good. I have to go back in 3 months, which I’m dreading.

[Superzob]

I think we (and doctors) often get this the wrong way round - we're not looking for a diagnosis, we are looking for a cure, or at least something that can make us feel better. Diagnoses are just a way of targeting treatment, but if you can't get a firm diagnosis, you still need treatment for whatever ails you. Consequently, I always encourage the doctor/consultant to offer an alternative to nothing, ie, something in their expertinence which MIGHT work, even though they can't offer a confirmed diagnosis. Of course, it might NOT work, but at least it's a start and could get medical professionals to "think out of the box" and try a few alternative treatments. And at least it's a bit more positive and will make you feel more positive too!

[Robin77 in reply to Superzob]

That's a very good point.

[Robin77]

You know, diagnosis IS just sometimes difficult. Are they still trying to pinpoint what is wrong?

[Abc64 in reply to Robin77]

Yes, but I almost felt that I wasn’t believed. I was diagnosed at my go practice 3 years ago, but had declined over this time. I can’t walk far. Strong smells can trigger an attack.

[Robin77 in reply to Abc64]

Maybe get a friend or family member to go with you next time? People are sometimes more respectful if you're not alone. I also find it helpful to have somebody I can check my impressions with. Yes, some professionals unfortunately have very poor people skills, especially when they feel challenged by symptoms they don't understand. Take care.

[strongmouse]

We are the experts in our bodies and how we feel and our medical history. We see doctors to "consult" them; to ask for their advice and expertise. Unfortunately many doctors forget that and don't listen. They jump to conclusion - maybe because they are under stress or time pressures themselves. It happens and is not 'you'.

Don't give up. I agree that diagnosis can be difficult and it is good that they are doing tests. Keep a list of questions and points you want to make when you see the doctor again. Some doctors are good but don't have a good way with people - they are focused on the disease not the person! Be assertive and keep on asking questions until you feel that you have the answers and treatment that is best for you.

[Hidden]

it took me ages2.he would not be so carefree if it was his breathing.seems like its a common problem.i wrote last weekit took ages to get believed.its horrible gasping 4 breathe and all they can come up with is anxiety.i knew it wasn't.its a different type of breathlessness.

[Spikedog66]

Sorry late reply. Write a list about all the issues you encounter and your worries then compose a list of questions you want to ask however trivial they may seem and ask when you next see someone. All these investigations you are waiting for are needed to rule lots of problems out not to find more. When they are all done you can say they have done everything. I was found to have a heart problem on an echo but dont need any treatment and they also found pernicious anaemia which caused my tiredness. Took 2 years. Still get tired and breathless at times but over the emotional rollercoaster for now. You wiil get over yours too.😊