Discussions By Condition: Eye conditions

Sarcoidosis

Posted In: Eye conditions 1 Replies
  • Posted By: nininati06
  • September 26, 2006
  • 09:53 AM

I was recently diagnosed with sarcoidosis in June. I had mononucleosis in July 2004 and the right upper quadrant pain from that never went away. I had a ct scan that showed enlarged lymph nodes near my liver. My doctor thought that I had both lymphoma and gallbladder disease. I had surgery to remove my gallbladder and to perform a lymph node biopsy. Two weeks later my doctor told me the biopsy showed sarcoid. I had never heard of it. My doctor didn't explain much about what it was so I got alot of information off the internet. I was referred to see a rheumatologist but never went. My doctor told me that few people are seriously ill from the disease and it would probably go away with time. Now I don't have a gallbladder but I am still having right upper quadrant pain. I also noticed that I am extremely fatigued most of the time and I have night sweats. I was wondering if I should seek medical attention or wait and see what happens. I would appreciate any advice that anyone would have for me. Thanks!!!!!

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  • Hi,After reading your story I really think you should go to your doctor. I was diaognosed with sarcoid 24 years ago. I too had acute pain in the upper abdomen and tiredness, along with vomiting, chest tightness, night sweats and kidney infections. I spent two years in and out of hospital, had my appendix removed (it was OK) but they did notice enlarged lymph nodes. So I was given a lung biopsy as a last result and they found that I had sarcoid after two years of wrong diagnosis. I was given prednisone and after one relapse and five years of taking this and being weaned off it, I was clear of any symptoms. All I was told that I would have to have yearly check ups, this I did for 10 years, when at last they said I no longer needed to come in. It is not until now at the age of 43 that I have noticed that the tightness in the chest that I always had has become worse. I was given a lung function test and they said I had the lungs of a 73 year old (I do not smoke), caused possibly from the scar tissue caused by sarcoid in the lungs. I have read about sarcoid and know now that there is a lot more knowledge and drugs avaiable than 24 years ago. Yes some people do not get the chronic form of it and do not need drugs, but if your symptoms persist and you have been diognosed with sarcoid, it would pay to go and see a specialist as the 30% that get the chronic form like I did will have permanent damage to their organs, which you may be able to avoid with the drugs today.Good luckKM
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