Sarcoidosis 2nd Opinion?

[Riker1964]

My pulmonologist seems to think Sarcoidosis is a benign disease. He said I need no follow ups and no testing to see if Sarcoid has affected any other body systems. (Right now all I know I have is bilateral hilar and mediastinal adenopathy). I think more needs to be done. What should I do? Are there Sarcoid specialists in Central NY? Thanx.

[brokenhearted]

Hi Riker:
I've read your messages from 1/26 thru 2/13 and I want to comment. Your doctor may be correct in not wanting to start treatment at this time, but to say you need no follow-up? Please seek another opinion and don't waste your time with this doctor. Sarcoidosis can go into remission but there is always a chance that you will have a flare up in the future and the fact that you are symptomatic now makes me question his/her opinion that you have a "benign" case.
I can't express enough that you should get another opinion. My husband had sarcoidosis and it wasn't discovered until an autopsy was performed. Please don't let this alarm you. This isn't normally the outcome. He never had the proper treatment because he wasn't given the proper diagnosis. You have the diagnosis, please make sure you get the treatment you deserve!!

[Riker1964]

Thank you for your comments, I certainly will talk to my pulmonologist and if he still insists no action is needed, I will go to my GP for a referral to either a new pulmonologist or an autoimmune doc.

Thanx again...

[brokenhearted]

I should also let you know that my husband's doctors told him that his chest x-rays were clear. He had the sarcoidosis in his heart (which was the cause of the cardiomyopathy he was treated for),lymph nodes and lungs. Of course his x-rays weren't normal, in fact a radiologist recommended a cat scan, an no one informed us. We placed too much faith in the "experts" and our young children are now without their father. Please let me know when you get to see another doctor. Take care of yourself.