dissapointed with appointment

[redmaggie]

Ah, its the rotten appointment syndrome! I had a respiratory clinic yesterday - follow up to lung function tests. I saw a registrar I'd not seen before. He was chatty but I thought a bit full of himself. Anyway, the good news is that I dont seem to have ILD, just a lot of stable TB fibrosis that was know about. What bothered me was he quickly dismissed very abnormal readings about lung volumes and closed down the conversation. He would not have mentioned them if I hadnt asked him ! I wanted an explanation but didn't get one. I blame myself somewhat, but felt i couldn't argue too much. I do have a medical science background and can understand results. Im not sure what to do now? try and contact the clinic again (awful!) or pay for a second opinion? Im feeling unsafe, stupid and upset. Any thoughts appreciated!

[Spanielmadlady]

Morning. I won't bore you with my story but i started with breathing issues in 2014 ( pre lupus diagnosis) I've had every test,scan ,physio,rehab even cameras up nose and into lungs (never again) been seen by respiratory, chest and asthma specialist Inc a professor at the North West lung centre in Manchester and had a 2nd opinion but no one can agree on the cause . The last theory was that my lupus affects the muscles leading to dysfunction breathing. So now I live with it and manage it treating flares as and when they occur although my rheumy has added in tacrolimus recently to see if that helps reduce my steroid burden. I currently experiencing a bad spell due to a trauma so there is clearly a stress response in the mix as well.

I actually refused to see respiratory at my local hospital because they were so arrogant and ignorant and yes I told them so too.

I dont know your symptoms or how it affects you but you can only do what feels right for you . All the best SML x

[redmaggie in reply to Spanielmadlady]

Oh dear! you have been through the mill by the sounds of it. I hope you feel less stressed now. Yes, like you my local respiratory clinic was unsatisfactory, so now I attend a big london centre which proved more helpful, but my lovely consultant has left. complications after TB are common, but its been a while for anyone to realise Ive got COPD like issue.