I was diagnosed with sarcoidosis after a mediastinoscopy last week. My thorasic told me and my fiancee that nobody ever dies from sarcoidosis. He made it sound like once my pulmonologist sees me and gives me steroids, I'll be fine. He even said I might not even need medication.
Here's the thing. It's been at least 6 years since I had a chest x-ray that showed a nodule in my lung. Since then, it's been a "wait and see" game. I now have 5 nodules but only one seems to be growing at a slow rate. The focus was originally on my nodules. After a pet scan, it was discovered that my lymph nodes were enlarged and active. After a year, and having endured a bronchoscopy that didn't give enough of a specimen for the pathologist to determine just what it was, I had my mediastinoscopy after pushing for it. Finally, I got a firm diagnosis. But nobody seems to be in a hurry to get the ball rolling. I have some appointments scheduled but one is in March. I think I have it in my eyes but have just been told my eyes are not producing enough tears. I've had problems with balance for 10 years but nobody would listen. I was diagnosed with fibromyalgia over 10 years ago. I'm now wondering if it was sarc then. I also have terrible IBS. Again, is sarc there too?
Right now, my chest hurts, I have a terrible cough, sweats at night and also during the day, pain in several parts of my body, and I'm wondering, what do I do now?
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I was diagnosed with sarcoidosis after a mediastinoscopy last week. My thorasic told me and my fiancee that nobody ever dies from sarcoidosis. He made it sound like once my pulmonologist sees me and gives me steroids, I'll be fine. He even said I might not even need medication.
Here's the thing. It's been at least 6 years since I had a chest x-ray that showed a nodule in my lung. Since then, it's been a "wait and see" game. I now have 5 nodules but only one seems to be growing at a slow rate. The focus was originally on my nodules. After a pet scan, it was discovered that my lymph nodes were enlarged and active. After a year, and having endured a bronchoscopy that didn't give enough of a specimen for the pathologist to determine just what it was, I had my mediastinoscopy after pushing for it. Finally, I got a firm diagnosis. But nobody seems to be in a hurry to get the ball rolling. I have some appointments scheduled but one is in March. I think I have it in my eyes but have just been told my eyes are not producing enough tears. I've had problems with balance for 10 years but nobody would listen. I was diagnosed with fibromyalgia over 10 years ago. I'm now wondering if it was sarc then. I also have terrible IBS. Again, is sarc there too?
Right now, my chest hurts, I have a terrible cough, sweats at night and also during the day, pain in several parts of my body, and I'm wondering, what do I do now?
December 13, 2010 - 10:14pmThis Comment
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