Bewildered Lung Function Test Again

[Justiny]

Hi to all, I have posted on this site a couple of time before. Last Xmas I had very bad chest, infection which did clear up. Doctors failed to provide antibiotics on my initial appointment but I was provided with antibiotics a few weeks later, after becoming really ill. I had x-ray and 2 CT scans, that showed I had scarring on the lungs.

I saw a chest specialist a few months ago who was unable explain the cause of the continual chest infection and the scarring. I was referred for a lung function test last September.

Then saw another chest specialist who could not provide a proper diagnosis or any treatment. He informed me that the lung function test was normal and had no real cause for concern. We discussed possible causes of lung scarring and blood samples were taken. He suggested I have tube down nose and lungs (can't think of name) I declined, as I suffer with Chronic Fatigue Syndrome and this investigation could cause further relapse. Told him I was aware that this type of investigation was not always conclusive, he agreed with me.

Today I received a letter re appointment for another lung function test on 22 Dec 2016. I did phone to check that it was correct and mentioned I still have no report from the previous September appointment. Was told that they had shortage of typists, so there was a delay in sending letters out.

I can't understand the need for another lung function test because the last one in September was completely normal. This has been ongoing for almost a year, no proper diagnosis, no treatment, just continual investigations. Is this normal practise?

Cheer to all

[sassy59]

Hi Justiny, it does sound as if your chest specialists are perplexed. Pete had a lung biopsy in 1991 and sarcoidosis was diagnosed.

I hope that someone can help you and see how the December lung function test goes. You have nothing to lose. Good luck to you. Xxxxxxx

[Justiny in reply to sassy59]

Thanks for reply. I think one year is a long time to find a potential solution. As I suffer with already Chronic Fatigue, lung functions tests make extremely tired, I know this a common problem from reading ops posts.

Cheers

[Mandy6513]

I would have thought the scans would tell more but im not a doctor....Im guessing the lung function test is to see if there has been any change and if i were in your position i would have it done and when i got the results would be asking NOW WHAT

[Justiny in reply to Mandy6513]

Thanks for reply. I had a fairly long consultation with the consultant during the last appointment, asked me a multitude of questions regarding, pets, work, house, lifestyle. I know that he is specialist in Interstitial lung disease but has not concluded that I suffer from this. Yes, I agree with you and would like ask, after nearly one year and plenty of tests WHAT NOW indeed.

Cheers

[Mandy6513 in reply to Justiny]

You dont say if you sill experience problems or its that your trying to find out what caused the scarring but I can only imagine how frustrating and stressful this must be for you especially with you having CFS

I Truly hope they get to the bottom of this and it just may be worth a call to the BLF nurses to see if they could suggest anything to help move forward to a diagnosis

What i would say is dont be scared to ask your consultant something or make suggestions....When i look back i wish i had been courageous enough to tell my GP that i felt he wasnt doing enough and i wanted to see someone else ...now when i go anywhere i load up on information

BLF helpline ....03000 030 555

[Tinkz]

Hi I have been having some breathing/fatigue issues for a while and after lot of pushing after normal spirometer's ct's I had a hrct and was found to have " subtle ground glass opacities" still unsure exactly what this means but chest specialists doesn't seem to worried and has started me on a course of prednisolone with repeat ct in feb. I hope you get some answers soon, the not knowing especially in your case being a year is very frustrating. Are you suffering shortness of breath ect?