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Afraid and confused.

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I am still so unsure about sarcoidosis. I read everything I can get my hands on, but I'm just not quite understanding my own, individual case.

I'm seeing several specialists and am getting multiple stories from them, as I have for years, although I've only recently been diagnosed with sarcoidosis. It's active in my kidney by all accounts, but I'm told that it's not active in my lungs. This is the strangest part to me because that's been the bulk of my troubles. I've had chronic bronchitis, lung collapse, etc., shortness of breath, pleurisy, pleuritic chest and upper back pain upon breathing and no activity whatsoever for years since this all started.

I just really don't understand and can only pray that I'm getting the best care and that my organs are not undergoing damage in the meantime.

This greatly troubles me because for so long, there was, "Nothing wrong." Now all of a sudden, my kidneys are in trouble. Well I felt it all along.

Lost, confused, and just don't know which doctor to believe.

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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