A new diagnosis of chronic pulmonary sarcoidosis!

Hello all,

I'm a frantic newby... I was diagnosed this week ..I'm devastated yet relieved it wasn't a cancer diagnosis. I've had cough for possibly fours years now..I didn't notice till last year but my family said they did. Last year I couldn't catch my breath after doing a twenty minute fast walk and panicked...since then I've been going to my gp. Instantly, have had 3 chest infections, have had 3 lots of steroids..but the cough still persists. In the last two weeks I've had a PET scan, EBUS test, ct scans and usual bloods and urine.

I was told that I have severely scarred lungs and only 46% lung capacity.. this has freaked me out a I still have no treatment as the docs have said they will call me back in 4 weeks to decide on treatment.

The day after the EBUS I have developed a seriously bloodshot eye. I have also developed lumps all over the body in the last 3 months.

Does have anyone have any advice for me about anything..?

I wish everyone with this condition all the best. X

1 Reply

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  • Hi. First of all don't worry too much about it. As you point out it could have been a lot worse. I had enlarged lymph nodes in my lungs which made me breathless when I walked briskly or up inclines. The problem stayed with me for three years and then went I got my lung function back again. That was about 16 years ago. I do think it has come back as I get breathless occasionally when I exert myself and I have several nodules on my skin. I have been told it might have come back but they are not sure. Have your regular checkups and keep a watch for any other symptoms. Realise that not all medical people understand sarcoidosis and that some of the symptoms are given other labels. It can be frustrating. I seem to remember that steroid treatment will help you however in the uk they don't like you taking it for long periods of time. I actually live in France and was on steroids for 5 years , it is only when I was taken off it my breathless ness was evident. Good luck and don't worry. For the most part my Sarcoidosis was an inconvenience although I accept everyone is not that lucky. Take care

    Graham

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