As some of you may be (or not be) aware. I have fought for 3 years to prove I had asbestosis, which was my original diagnosis.
Because I was going down hill so fast all the 'Top Dogs' have said I had IPF and not asbestosis as asbestosis was a gradual decline and not aggressive? but non could answer questions about other issues which I had suddenly developed, such as a level of ferritin (1800) which nobody had ever heard of being recorded before and even sent my scans to Australia to try and get an answer from their experts and why 9 months of chemo did not affect the levels. I strangely developed a connective tissue disease and other issues.
At the rate of decline they gave me less than a year to live and had me assessed for Lung Transplant, which I have refused as there was far too many questions they could not give answers to.
We (my wife Nevin and I) did our own research, we proved a link between 95% of my symptoms and asbestos related conditions. We wrote a report and sent it to the 'Top Dogs'. From those who responded the general consensus of opinion was that they could not prove (or disprove) our findings, as insufficient research had been done in this country to verify or dismiss our findings. What we did find in our research (mainly info from America and in particular the reports written about an incident in Libby, Montana), was that due to the asbestos exposure patients tended to show an aggressive downward spiral for approximately 2 years then deterioration levelled off / slowed. To everybody's surprise my last 2 lung function tests have shown a stabilisation of my condition ( IPF continues being aggressive and can become more aggressive but doesn't stabilise ???). After 3 years of fighting I can now start making a legal claim and my condition can be treated in the correct manner. Please do not get me wrong my consultant has been brilliant and brought in a lot of specialists to try and identify and treat me as necessary, but unfortunately for him I was showing unusual and complicated symptoms
But the important thing is you know your body better than the doctor and he only asks what he thinks are pertinent questions and your reply helps him make his assessment, but he mightn't be asking the RIGHT QUESTIONS? so its up to you as a patient to inform him of ALL your issues, and if your not happy about treatment or diagnosis GET a SECOND OPINION -Its your body and your life.
Hope some of this is useful to someone especially the last paragraph regardless of your condition.
I know I won't see retirement age but I am happy in myself and positive. It's better than being depressed and upset as I can't do anything about my condition. Remember A smile uses less energy than a frown so keep smiling folks