Sarcoidosis Support Group

Positive ACE tests are found in 70% of sarc patients. So that leaves 30% that have sarc and don't have elevated ACE. If the lung tissue is not affected, then there would be a normal x-ray, but most sarcoid patients have some lung issues. The best test for sarc is the Kveim test, where they inject you with sarc tissue and look for granulomas to form in about a month. It is possible for sarc to be in only the eyes, liver or heart, but more often the lungs will eventually get involved at some point. If it was in the heart, you would be having symptoms like rapid heart rates and arrthymias; if it was in the eyes, then you would be sensitive to light. You could get diagnosed easily by an opthamologist who would look for changes in your eye tissue.

Sometimes it can take years for all the pieces to get put together and give you a diagnosis. Getting the Kveim test might be a good idea.

I see by your posts that you are heading to HSS. That's a good place to get evaluated for RA. They should be able to rule that in or out, and then you will have a better idea of what to do next. Keep us posted.

Sarc is a disease of exclusion. There really is no one test that says 100% sarc. Usually a biopsy is kind of what they will then say you definately have sarc. Like shrinking said it can take awhile to put the pieces together.