Sarcoidosis
Has anyone had/have sarcoidosis? Each CT scan is good then bad as far as nodules. This is going on for 7 yrs with no actual treatment plan except an inhaler. Looking for anyone that can relate
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I find this very interesting because I had a Dr do testing and sent me for a consult with a Sarcoidosis Specialist, but then just left me hanging and never followed up with a final Dx, or non-Dx, just dropped it. But, since then, I have had so many symptoms of Sarcoidosis, including lung nodules and scar tissue on one lower lobe. I have MCI, so can't recall the other symptoms I had right now, but always wondered if I did have Sarcoisodis. I know there were other symptoms that pointed to it, but just can't think of them right now. In my life, just another time that Drs have thrown around Dx's, but then left me hanging. I did finally get the courage to be my own advocate and speak up to the Drs, but this was after that episode. I am curious if you are on oxygen because of oxygenation issues? I have developed these issues since about 2019 and still continue to deal with oxygenation "dips" all the time, even into the upper 70s. But, again, Drs have failed me! LOL! Are oxygenation rate issues related to Sarcoidosis? Just wondering. Thank you for sharing. Your post really sparked my interest.
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Hello. Curious how they found granulomas in your kidneys ? Did you have symptoms and then a kidney scan.?
I have not been on prednisone yet but since I was tested for everything else and all is negative, I assume it is just inflamation that prednisone would help
Hope you are doing better now