The United States

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I s there anyone in the United States? On this forum

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  • Posted

    Yes, I am from the US
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    • Posted

      To add: I was diagnosed with pulmonary sarcoidosis in 2016. I am 32 years old. I was having rib pain which prompted me to get a chest Xray which is when the Dr's saw some spots on my lungs. I was then referred to a pulmonologist and received a CT scan of the chest which showed lots of micro-nodules throughout my lungs. I received a lung biopsy and that is when I was officially diagnosed. I was on Prednisone for about 9 months and eventually tapered off around this time last year. My most recent CT scan in December showed a significant improvement and decrease of the nodules. 

      I never really had any symptoms besides joint pain and luckily it hasn't caused me much trouble (physically) I suffer from health anxiety though, so this experience was certainly a trigger for me. 

      Not sure of your experience but hope I can help if you have any questions!

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  • Posted

    Yes. I was diagnosed in 2012 after a radiologist saw enlarged lymph nodes on an mri. I had a  mediastinoscopy for an accurate diagnosis. I can’t say that I’ve found a doctor who really understands it. I have joint pain mostly in my hands and feet, rashes, conk out at the end of the day, brain fog... I see a Rhematologist who leans towards lupus/like autoimmune disease but no one seems to know much about sarcoidosis symptoms other than lung problems. I also have a high ANA. Does anyone else have a high ANA due to sarcoidosis? My ACE tends to be in the high normal or slightly elevated. I’m just confused if these symptoms are from sarcoidosis or something else and have never gotten a definitive answer. Thanks!
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