Sarcoidosis

[good2u]

I was diagnosed approx 11 yrs ago with sarcoid. I was 28 at the time (female) and was told I had an accute case that would likely not return however they could not be sure. Over the years I have experienced different things that the doctors have told me have nothing to do with the sarcoid but I always wonder if they are right. I have had a few case of atrial fib in the last few years. Right now though I have been experiencing joint pain again which was the first symptom I had ever experienced. 11 yrs ago it was in my ankles and I could hardly do stairs, it lasted only about 2 wks and went away until the next symptom occured. It's different now, my hands, wrists and ankles have sort of a dull aching all the time. Doctor doesn't know why but doesn't think it is the sarcoid. How can I be sure? He hasn't sent me for any further testing since I first had sarcoid. Should I be having any regular testing done? Could I be experiencing sarcoid again? The other thing that occurs often are eye infections, and mouth ulcers I realize they may have nothing to do with each other but they occur at least half a dozen times in a year. I don't want to sound paranoid, they are all managable on their own and even if it were sarcoid would I really do anything differently for them? If anyone has any helpful info it would be much appreciated. Thanks!

[ddft71989]

IMO, I have been suffering from Sarcoidosis for the last 5 years knowingly. The symptoms all went away when I recieved high dose steroid treatment the first time in August of 05, but came back with avengance in June of 06, leaving me with disfiguring leg scars. It was very hard to convince a doctor that I had the Sarcoids back. After many visits to various doctors, and wound centers, I ended up seeing a dermatologist and having a skin biopsy done to show that yes I still have Sarcoidosis. I too have the pain and swelling in my feet, knees and hands. I do believe that you can get the Sarcoids back. In fact, it is rare, but I did read info on this when I was first diagnosed. I also at the time of the biopsy of the legs, ended up with a catscan resulting with lung inflamation again. This was back in October of 2007. I have been off the Steroids and Methotrexate since October due to losing health insurance, and am afraid that the leg symptoms are flaring up again. Good Luck to you, I suggest if you are feeling ill with certain things, and you feel that it is your Sarcoids acting up you need to be persistant with your doctor and have him do and ACE Level blood test. Not always accurate, but it will help to know if the levels are up. Sarcoidosis is one of the hardest diseases to detect, and if you have it severe enough, it could cause some severe damage.