Discussions By Condition: Eye conditions

Sarcoidosis

Posted In: Eye conditions 11 Replies
  • Posted By: nininati06
  • September 26, 2006
  • 09:54 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, but there are no other symptoms. 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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11 Replies:

  • Hi Sorry to hear about your DX of sarcodosis. They are still going back and forth between a DX of Sarco or Hypersesitivity Pneumonitis with me. Go to MSN site and check their "groups" link. There is a great group called Sarcobuddies. They have lots of info & support. Take care.
    Anonymous 42789 Replies
    • September 27, 2006
    • 06:02 AM
    • 0
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  • I'm sorry to hear about your recent dx of sarcoid. I was diganosed with sarcoid in 2002. I had all the symptoms any symptom you find I had it. At first it was scary becasue I had read so many post about what is does and the problems some people have. I was on a steriod (predisone) for 6 mths and my sarcoid has been in remision for 4 years now. Sometimes things are not as bad as they seem. But now I'm going through the upper right quadrant pain. I will have a CT scan today to see if they find anything. Good luck with your sarcoid.
    icequest 1 Replies
    • September 27, 2006
    • 03:57 PM
    • 0
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  • I have had Sarcoid all my life, I am 21years old and the best advise I could give you is, make the rheumatologist your bestfriend! They really are alot of help. I have sarcoidoses in my eyes, bones and lungs. I never had it go away before but maybe one day it will, who knows. But sarcoidoses can do a lot of damage to your body!
    Anonymous 42789 Replies
    • November 4, 2006
    • 07:44 AM
    • 0
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  • Be thankful you don't have lymphoma. I was diagnosed with sarcoid in 1973 after a lymph node byopsy. I'm now in my 60's and have rectal cancer. and a ct scan shows a mass below my lungs and the radioligist thinks the cancer has spread to my lung area. I'm hoping that the mass the radiologist saw turns out to be sarcoid.
    Anonymous 42789 Replies
    • December 26, 2006
    • 02:44 AM
    • 0
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  • Sorry to hear about your dx. However you mentioned that you were also DX with lymphoma? If I read that correctly... Anyhow, I was going to urge you to make your appt w/ the rhumy because of the night sweats because that is a sign of the thyroid and a couple of other things not working correctly..:) Best of luck
    kitkat2 17 Replies
    • January 4, 2007
    • 07:33 PM
    • 0
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  • 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, but there are no other symptoms. 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!!!!! By all means go to a rheumatologist!
    Godsbeautifuleyes 1 Replies
    • January 23, 2007
    • 07:31 AM
    • 0
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  • Your right upper quadrant pain could be an enlarged liver or sarcoid involvement of the liver. Sarcoid rarely causes liver damage but a simple liver function blood test can tell how your liver is operating.
    Anonymous 42789 Replies
    • February 12, 2007
    • 04:39 AM
    • 0
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  • What others symptoms have you had and what nationalitiy are you?
    Anonymous 42789 Replies Flag this Response
  • I have had doctors who asked for blood work and always asked me how much alcohol did I drink. This has gone back as two years prior to my diagnosis. I don't drink. Then they would take another test on my liver, and everything was fine. This happened quite alot before I was diagnosed. I would sometimes have numbness and tingling down my limbs. Prominently on my right side. That doctor said I was under alot of stress. I was, but that wasn't why I was having the numbness and tingling. I went to a cardiologist, because my heart was racing. She gave me medication to slow it down. The last thing that happened to me I went to an ophthalmologist that said I must have let my sinuses get out of control, that is why my right eye closed on me. I am a Black American. I can't understand what nationality has to do with this?
    Anonymous 42789 Replies Flag this Response
  • I have had doctors who asked for blood work and always asked me how much alcohol did I drink. This has gone back as two years prior to my diagnosis. I don't drink. Then they would take another test on my liver, and everything was fine. This happened quite alot before I was diagnosed. I would sometimes have numbness and tingling down my limbs. Prominently on my right side. That doctor said I was under alot of stress. I was, but that wasn't why I was having the numbness and tingling. I went to a cardiologist, because my heart was racing. She gave me medication to slow it down. The last thing that happened to me I went to an ophthalmologist that said I must have let my sinuses get out of control, that is why my right eye closed on me. I am a Black American. I can't understand what nationality has to do with this?Sacoidosis seems to effect some races more than others although they're not sure why. There is a lot of good information on this as well as other sites although there are still massive holes left in the research, things they just don't know at the moment.
    Anonymous 42789 Replies Flag this Response
  • Sarcoidosis can cause kidney problems and scarring of the lungs, but it is not known to turn cancerous. About 90% of those who develop it are completely cured within 2 years, with or without treatment. 10% develop a persistant chronic form of the disease. Corticosteroids are the recommended drugs to treat it..lymphatic system
    abdrew 24 Replies
    • February 1, 2008
    • 05:57 AM
    • 0
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