Well I started with chest pains and difficulty breathing a full 12 months ago now, My first CT scan showed a partial collapsed lung lots of grey shadows (Consultant said he didn't know what that was (?!)) and lots of white flecks and 'blobs'. I have since had two further CT scans and my chest consultant is happy to sign me back over to the rheumatologist for his care alone. I am still suffering with shortness of breath and lots of pain in my chest and back over my right lung. I had a distinct impression that the chest consultant thought that I was complaining about nothing so they put one of the oxygen measure 'things' on my finger and my resting oxygen level was 96, I then went a walk up and down the corridor and my oxygen level fell to 91 (which according to the british lung foundation site is pretty low). So, I am now going for a VQ scan-anyone had one of these?, incase I have blood clot(s) on my lung, if not then i'm back with the rheumy as the chest consultant doesn't seem to want to know!!
This is so not normal as I am so limited in what i can do before gasping for breath. I am so fed up with it all i really am, all I want it to be able to do things again.
Angela
I had a VQ scan many years ago when I did, indeed, have PEs (pulmonary oedema) or clots on the lung. Do you have APS? That could obviously cause blood clots. Or it might be inflammation of the lung from Lupus (or I guess even Sjogren's) reducing lung capacity. Have you had spirometry tests?
I too am currently having SOB, fatigue, terrible brain-fog, balance problems etc. and am on low-dose steroids. Not sure yet what's going on: stress-induced Sjogren's flare-up; development of Lupus???? Who knows?! Work in progress.
Keep us updated and good luck. And Don't Panic!
Thanks for your reply. having had a quick look at APS and Sjogren's I don't think I have those. I have had two LFTs which show a lung capacity of 65%. I have an appointment with the rheumatologist i three weeks so I think I'll have to pick his brains as he seems to be the only one willing to give me his time. Take care yourself too, the fatigue gets much worse with the shortness of breath doesn't it. Angela x