Desparate for proper diagnosis.

[Rache1968]

Can anybody help? I have had chest symptoms for four years.I am an ex smoker of 35 years and four years ago, woke up unable to breathe properly and pain through my whole chest which particularly hurt like a searing pain if I pressed down on it. It was COVID time so nobody could see me but emergency services stated my pulse oximetry was fine. However,it took me three months to breathe properly and be able to walk down the road without getting breathless. Since then I have had ongoing constant attacks of episodes of difficulty breathing with awful inflammation in my chest.

I have tried everything to investigate it as it has a huge impact on my life. X rays always normal, blood tests always normal, an endoscopy normal, musco skeletal exercises and I have paid for constant private checks as my doctors have shown little interest beyond prescribing painkillers. I had a CT scan done in 2023 he said fine, but I had some slight unexplained squiggles in my right lung. Report below.

CT Chest (does not cover lungs/heart)

Performed April 5, 2023

Clinical Details:

3 years ' history of costochondritis. Recent chest infections with green sputum, chest pain and shortness of breath, currently taking analgesia and antibiotics. Recurrent chest infections, complaining of dyspnoea in between episodes. No weight loss, night sweats (? menopausal) ex-smoker (heavy)? lung mass/fibrosis/emphysema/bronchiectasis

Findings:

Unenhanced mediastinum appears fairly unremarkable with no gross lymphadenopathy large hiatus hernia, cardiomegaly or intra tracheal/bronchial lesion.

Pleural and pericardial spaces are clear. Minimal pleural thickening towards the apices more so on the right side with foci of calcification noted. There are multiple small calcified granulomas particularly in the right lower lobe. Otherwise, lungs are clear. In particular, no emphysema, bronchiectasis or any other interstitial lung disease is detected. No focal bony destruction is seen.

Impression:

No significant pathology is identified.

The only thing he asked me was if Id been in contact with asbestos at all which to my knowledge I hadn't.

2 months ago, I chased my doctors for a spirometry test they were going to give me before lockdown and finally got one done. The nurse said it appeared to look good but I had to chase my doctor ( again) for results.

I phoned him and he announced I had borderline COPD, no explanation, no details, mentioned something about 69% and put me straight on a steroid inhaler with spacer at night and a crushed pill in the morning which he said I had to take until I saw the nurse for another check in 4 weeks time. I was devastated,there was no supportive conversation from him, no details, nothing. I went for another spirometry privately and they stated I had 72% and no COPD so I'm now confused..

Since taking these meds, the breathing and pain has got worse and is now accompanied by constant coughing, a hoarse voice, gripping pain in chest, every day is now distressing and I feel nowhere nearer getting to the bottom of my symptoms. My cousin has COPD and said the meds should not be causing that level of pain. Phoned my doctors and explained symptoms but they said I must stay on meds. I am desperate to solve this and know what is wrong as every single test I have done up to now has yielded no results. I am having another COPD test with the nurse on December 6th.

Is there a way I can conclusively find out if I have COPD or not and which type it is as I've been running round like a headless chicken to get answers. And does it bring on monumental pain in my chest inflaming and breathing difficulty. Have had hundreds of ECG's and not the heart. Have had ultrasound scans of pancreas etc to see if that's kicking something off.

My symptoms are

Periods of breathlessness when doing basic activities eg housework, climbing stairs

Gripping pain in the chest, really hurts if pressed from outside

Can't bear smell of smoke or bonfires, lungs react badly

Constant thumping noise in left ear (four years)

Irritation in lungs and chest, dry cough (since meds)

Since taking meds, hoarseness of voice

Lost appetite 3 days (since taking meds)

I have come to your community for help for guidance as you are the experts 🙏 Many thanks

[Mellywelly]

Wow, you have been left high and dry by your doctors. There are more experienced lovely people on this site than myself as every day with me I learn something different with copd. I hope you get some proper answers soon chook as that's half the battle. Good luck 👍 😉

[Rache1968 in reply to Mellywelly]

🙏👍

[Keem59 in reply to Rache1968]

Hi...It's awful when you feel completely let down. I would ask to see a respiratory consultant as I think they would handle your concerns better and give you clearer clarification as to what you have or have not...pick the phone up on Monday and ask for this.

[Rache1968 in reply to Keem59]

🙏👍

[Ergendl]

That sounds like appalling care from your GP surgery.

May I suggest you find the name of a respiratory consultant at your nearest teaching hospital and go back to your surgery insisting on a referral to them.

May I also suggest you contact the ALUK charity's helpline and talk to the nurse there, who will be able to answer your questions and give you better advice than I can. Phone the helpline on 0300 222 5800.

All the best, and do let us know how you get on.

[Rache1968 in reply to Ergendl]

🙏👍

[Alberta56]

There are other lung diseases as well as COPD. I don't know much about them- the ALUk respiratory nurses will know much more than I do, but Ergendl's right-you need to see a proper specialist. They will hopefully look at all the possible causes of your symptoms.

[Rache1968 in reply to Alberta56]

🙏👍

[Patk1]

Welcome to the forum.it must be frustrating for you. Ru on anti inflammatories/ pain relief for chostochondritis? I believe it's v painful & does get mentioned here occasionally - u could perhaps do a search here,see if any advice? There's great advice on many probs and help, on aluk website.u may find " controlled pursed lips breathing technique " useful to learn + practice for when u struggle,walking,in pain etc.it helps u relax too,focusing on breathing.id make appointment with gp if pain relief isn't adequate.once ur on top of pain, can use breathing technique, u can focus on cough, etc.btw have u tried a daily antihistamine? I also use little air purifiers which are very gd+ remove dust viruses,bacteria, sm particles frm air.i gargle as far back as I can if coughs irritated + a sm ttspn of clear honey is gd to coat throat.sometimes a collection of small changes can make a big difference...oh,do u have acid or reflux - it can cause coughing,irritate Airways! Lungs.i take omeprazole for Gerd.its another thing to consider

[Troilus]

Hi Rache, asthma comes to mind, but I’m not a medic. Give the ALUK nurses a ring on Monday - they might be able to shed some light or at the very least help you with the questions you should ask.

[Rache1968 in reply to Troilus]

🙏👍

[Rache1968]

Thank you all so much for this, it's hugely helpful. 🙏🙏

[Coughingalltheway]

My husband has calcification in his lungs; it was discovered when he was having a MRi scan for an unrelated health problem and this was diagnosed as mild Asbestosis after he was referred to a lung specialist.

Asbestosis can take up to 40 years to develop so try to think back. Did you or any of your family work in a construction or shipbuilding environment? Was there any renovation work done at the schools you attended? People exposed to asbestos often brought the dust home on their clothes.

Intermittent chest pain and shortness of breath are symptoms of Asbestosis. My husband had both these but all the tests on his heart came back clear. For years he complained about a sudden stabbing pain that hurt even more if he pressed on it. I had actually forgotten about that until you mentioned it.

He worked in contruction and had done renovation work when he was in his 20s so he was entitled to a small pay out from the Government.

His Asbestosis hasn't really affected him too much (he's just turned 70) and we probably would never have known about it if it wasn't for his other health condition.

Your hoarseness and dry cough can be a side effect of your inhaler which you do imply in your post. COPD is an umbrella term for mutliple lung conditions and as an ex-smoker, it's often their default diagnosis unfortunately.

Obviously I am not a health professional so I can only speak from personal experience but maybe have a think about it?

All the best

Jan xx

[Rache1968 in reply to Coughingalltheway]

🙏👍

[Lfcpremier]

How dreadful for you! Agree with those who say, find yourself an empathic lung consultant tp see if ypu can get to the bottom of this. You shouldnt have to e dure this on a daily basis! Good luck! Xx

[Rache1968 in reply to Lfcpremier]

🙏👍

[LissacFrance]

Not got very much to offerbut, asbestos affected lungs would normally show up on an X-ray. The chest pains could occur due to that if you had mesotelioma. It doesn`t sound as if that is te case. If problems have been worse since Covid, then perhaps that is te main culprit. Covid affects people in many different ways, lake of sense of smell and taste for example. You don`t have to have shown usual signs for it not to have affected you. Bear in mind that tests do come back as OK when they are masked by other things going on. My only advice is obviously try to take more exercise to keep the lungs working and perhaps meditation to help reduce the anxiety caused by the lack of definitive results. Take care, stay positive, Chris.

[Rache1968 in reply to LissacFrance]

🙏👍

[Lutontown]

Haietus hernia can cause acid reflux, which in turn, if the stomach acid gets down into your lungs, can damage them. This would I think, show up as bronchiectasis, which they say you haven't got. Has your sputum been tested for bacterial and fungal infections? If your sputum is green, I would have thought there was something unwelcome in your lungs.

I work colleague had asbestosis, and it was due to making up hydraulic hoses, which in those days contained asbestos.

[Rache1968 in reply to Lutontown]

Yes, earlier part of this year I was coughing up very tiny foamy white phlegm which was tested but nothing. My mum has a hiatus hernia, I had an endoscopy last year and nothing except mild acid reflux. Just odd as I get periodic chest pain and breathlessness. Definitely going to insist at my GP's they refer me to a specialist as this has gone on far too long and phoning Asthma and Lung UK next week as you've all been amazing with great suggestions. I've also paid out for an investigation ultrasound of the chest wall for next week so I'm ticking it off like Sherlock Holmes.

[PaperQueen in reply to Rache1968]

I have nothing to add to the many useful replies here, just wanted to say I feel for you and all the difficulties you are having. Best of luck getting it all sorted. x

[Rache1968 in reply to PaperQueen]

🙏👍

[KitKat1954]

Hi Rachel, sorry to hear about your difficulties. No fun. I believe it could be your large hiatal hernia is playing a major role in your pain and lung condition. I would try to find a specialist to address this. Good luck and best wishes. 😔🙏

[Rache1968 in reply to KitKat1954]

🙏👍

[alcgb]

Rachel, I have severe COPD, a combination of bronchiectasis, asthma & ABPA. The only time I have ever had pain in my chest was when I had pneumonia. I don’t think chest pain as such is a symptom of COPD but everyone is different. How frustrating this must be for you. I find it strange that your CT scan says ‘does not cover lungs/heart’ What does that mean?! A CT scan covers both, what else would it cover?? I should query that, &, if you can afford it, go & see a respiratory consultant privately. A consultation will cost about £250 & then you can be put back on the NHS for any tests or further treatment. Good luck, I wish you well.

[PW_R]

I also don’t have copd (in the technical sense - fev/fvc less that .70). But I definitely have chronic mild obstruction which is now very clearly progressive. I have all the risk factors for copd (smoking, mild asthma, some genetic risk.) I have found the many consultants I saw are very reluctant to even suggest that one might be well into copd territory unless you hit the numbers. I don’t understand this / maybe because they know how dire of a diagnosis it is. I’m not saying you have it but also I have done soo many tests & there all slightly off but not enough to say I have it. But clearly do. I’ve realised pulmonology is in the dark ages & just be aware more teats and more pulmonologists won’t necessarily give you a definitive either way.

Im sorry this has impacted your life so much. I know exactly how you feel. (M40)

[nadsagooner]

Hi Rache1968, I'm saddened by the pain you're going through and pray that you get through this. In addition to advice by others, I would suggest that a cardiologist should also be referred as sometimes cardiac issues may sometimes cause breathing problems. Also first rule of medicine is that if the prescribed medication is making your condition worst than it should be stopped immediately. I wish you good luck and pray that you find a solution asap!