Almost a year and still no diagnosis, don't know what to do

[Virond4w]

Last year I started to have bouts of breathlessness which I've never had before (27m) this stemmed into coughing up sticky pale yellow strings or chunks, as gross as it sounds, since then I undertook a peak flow test, I took home a device, which was inconsistent, I was given both types of inhaler with no chance of formal diagnosis using spirometry due to covid19, this is still ongoing and a chest xray which at the time was clear. I've had two courses of antibiotics

They've tried to point it to; allergies, allergic rhinitis, GERD, asthma and no diagnosis, I've also been dealing with issues with my colon and not sure if these two things are related, for which the latter I'm due go have a colonscopy

Since then I've struggled with intermittent periods of breathlessness, coughing up small chunks of very sticky pale yellow mucus and just have no idea what to do, what is it, is it asthma or something else?

[Virond4w]

Here is an example

[Rusalka in reply to Virond4w]

That’s just what mine is often like and I’m supposed to have asthma and bronchiectasis. Never posted on here before but I’ve been reading it for several months. It’s very useful and people are jolly kind. x

[Alberta56 in reply to Virond4w]

I'm no expert but I think you need to go to your GP and insist on seeing a consultant for a full round of tests to find out just what is going on. It's hard to be assertive when you're feeling rotten, but you are entitled to see a consultant. If your experience is anything like mine, it will take a long time to get the appointment, get all the tests done and then at last find out what treatment you need. (In my case bronchiectasis, which does not respond to short courses of antibiotics.) Good luck. xxx

[Virond4w in reply to Alberta56]

Thank you Alberta. Yeah my samples had no detection of bacteria but they gave me a short course, low and behold a month later and I have another bout, there was nothing suggestive of an infection but still struggle with this, I think bronchiectasis appears like this also?

They're currently giving me a nasal spray and treatment for acid reflux and 1 month revist where then they will have me referred to a repository specialist, they're convinced it's allergies, rhinitis, post nasal drip excabaited by acid reflux

[Alberta56 in reply to Virond4w]

My first sputum samples didn't always show anything. These bugs are cunning little beggars.

[Mavary]

It sounds like your bronchial tubes not the lungs. I used to cough and cough and they couldn’t find anything. I would cough up exactly what is in the picture. I’ll never know what it was but it is real. I think maybe you like I have small bronchial tubes. I have gone on to develop mild asthma and aspergillosis.

[Kelly100]

I’m sorry you are feeling so unwell. I’d encourage you to push for a CT scan to get a clearer picture of your lungs. X-rays can only show so much. Good luck.

[Virond4w in reply to Kelly100]

Thank you Kelly

Dan

[Debs_ALUK Partner British Lung Foundation]

Hi Virond4w

If you think it may help to discuss what is happening at the moment with our nurses, do call the Helpline on 03000 030 555. They may be offer some insight and also help with questions to ask your Health Care Practitioners. Don't hesitate to ring if you need us.

Take care

Debs

[ninelives]

Hope you get the treatment you need and a diagnosis soon.It is so stressful not knowing the cause when you have the facts it helps tremendously.

Do let us know how you get on .

[Person99]

Sadly, I've found you will have to do a lot of your own investigation and advocating. Assuming you are currently being managed by your GP, you can take or leave the following, which is what I did:

Step 1: Write down your medical history -even if you don't think it's relevant, write it down. The weirdest things seem to be connected.

Step 2: Research. What are your prominent symptoms at the moment? You mention the lung/phlegm issues and the gastro issues. There are a fair few conditions in which these are both symptoms, but equally they could just be two separate things. For me, I started searching with my symptoms and then took a list of the main suggestions. Then I went through methodically one by one. Does this seem feasible based on the other symptoms it discusses and the other information it provides about it? If no, cross it off. If yes, write a list of all the relevant symptoms.

There is the tertiary search: google -> NHS website. Then you want to go to the specific site for that issue E.g. cysticfibrosis.org.uk/ This aspect is more factual. I then go on a space such as this to see more anecdotal information. I can use the search function to look in a specific group for phrases relating to my own symptoms or questions and see if it seems to be a common theme. (For example, I found this post because I'm searching Rhinitis as I've just been diagnosed and want to see if it will add another piece to the puzzle to whittle down my diagnosis.) This is all just to paint a picture of whether it seems like an avenue worth exploring with Doctors.

Step 3: I tend to call the relevant charity (as long as they aren't for diagnosed folks only), to get a sense of things. Whether it's BLF in general, who are great as they actually have Nurses who are really supportive, or the specific charity for the issue you think it might be. If they give you any advice, be sure to write this down as you may need to refer to this when speaking to the GP.

Step 4: Once you've narrowed it down, I would recommend collating your information in a clear and concise way as sometimes GPs can be dismissive. Don't use paragraphs, instead bullet point relevant symptoms and time frame under each potential diagnoses and separately list the full medical history. I've gone as far as to make an excel document broken up into Respiratory, Musculoskeletal, etc.

Step 5: Then I would approach the GP to ask for the relevant referrals; when they ask "What makes you think it could be X" you can refer to your list of symptoms. You also have the right to request where you are referred to, if you have a preference. You are allowed to be investigated for multiple things at once, if you wish -that is entirely your decision, but they may try and push you to do one thing at a time.

To be honest, this is sad to say but you're doing well to have even been offered those diagnoses so soon, in my experience. But I have had particular bad luck, in fairness, so perhaps I'm being unfair haha.

It completely sucks to say, but I think it really is a case of becoming your own Doctor for the first part. I've now got all my referrals and am just starting my appointments from this week. It can be hard work, but I feel like if you wait for them, you'll be waiting forever. We may not have the medical knowledge, but we have the knowledge of our body and the symptoms we have. So, if we seek out the information that is out there, we can hopefully point the Doctor in the right direction and cut down on some of the time. I appreciate it's not for everyone though.

Either way, sorry to hear you're struggling with this and hope you get the help you need.

All the best