Is there anyone out there with the same diagnosis as me?

I am quite new to this site and am struck by the courage of many of the members, and I wonder if it will be like this for me. so far I have seen three doctors and a consultant, originally I was diagnosed with suspected sarcoidosis, i was sent to a consultant who did a full blood test a high res ct scan and a lung function test, He said that i have severe emphysema with a loss of 60% of my lung surface area and a gas transfer of 40% predicted but with no obstruction, i have seen 3 different doctors and they have never seen a case like it, my spirometry fev is at 98% is there anybody out there who is like this?. I am struggling with tiredness and breathlessness, I find that i can physically do most things but will be exhausted afterwards.is my case really unusual or are there thousands of us in the same boat?

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  • I find if I have things to do small steps e.g. going out to the car ha ha have a seat in the hall get to it sit until I get my breath, next get to the car sit until I get my breath, lug the oxygen in to the car on to the passenger seat again sit until I get my breath, just hope I don't forget anything and have to go back such as lock the door ha ha! What a life but keeps you going Val

  • I have the same problem and the consultant says i have Emphysema and Asthma , my FEV went from 58 to 43 in 5 months and i get very breathless, i have been told to stop taking spriva and have been given a turbo inhaler four puffs a day, i am having a cat scan on the 18th of this month , the consultant says its very difficult to treat anyone with copd and asthma so it looks like a long haul struggle sadly .

  • Thanks for all the responses it seems this condition wears many faces and that many people have similar problems it's good to know I am not alone! and no two cases are exactly the same,I need to know if the doctors are right and weather i did have sarcoidosis.If my emphysema is a result of smoking I've already stopped, but if it is from sarcoidosis it could come back at any time and eat what's left of my lungs as I only have 40% left this could be important I did not know I had it last time so how would I know if I had it again?

  • Hi

    I'm just new here. I have sarcoidosis which was diagnosed after a CT scan and bronchoscopy. I was initially put on a high dose of pred and azathioprine. The pred has tapered now from 40mg daily to 6mg at moment. I feel pretty well now (compared to how I did) and I've just joined the gym at work.

    It's a very scary disease but it's live able with. It has obviously trashed my lungs and I just don't understand my lung function test results. But I'm not yet in oxygen and my resting SATs are 98%.

    So you are definitely not alone

    Marie

  • I should have said that you sound just like I did before I started on my treatment. So desperately tired - id lie on the couch, desperate for bed but didn't have the energy to drag myself to the bedroom. I also of course had SOB.

    If you haven't started on meds yet then please don't despair too much.

    Marie

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