Sorry to hear of your ordeal.
You have a very difficult problem: undiagnosed, long-standing chest pain. The cardiologist you have seen has gone through the standard work-up, including holter, echo, stress tests, and heart cath. The bad news is that it is quite possible that a diagnosis for your problem will not be made. In fact, a rule of thumb in medicine is that the longer someone has had a problem, the longer it can take to diagnose the problem. The good news is that the normal results on your tests are somewhat reasurring for your long-term prognosis, especially if we ignore the sarcoidosis.
Now, sarcoidosis will uncommonly involve the heart (approximately 5% incidence). This involvement can also be difficult to diagnose. The most common presentation is a slow heart rate due to complete heart block. The second most common presentation is PVCs or ventricular arrhythmias. Less common presentations include heart failure, SVT, and pericarditis.
The diagnosis of cardiac sarcoidosis depends upon a heart biopsy, which feels similiar to a heart cath. However, the diagnostic accuracy is only about 25%. Other tests that some centers use include thallium and gallium scanning.
My best advice for you is to seek a second opinion at a large, academic heart center. The specific question is whether or not you have heart involvement.
Hope that helps, and good luck.
I don't mean to pick apart words here, but is it the sarcoidosis in itself that makes my longterm prognosis somewhat reassuring? would these test results without sarcoidosis have a pretty good prognosis? Thank you for taking time to answer questions on this form.
Does anyone else have problems similar to this? If so e-mail me and maybe we can compare notes. ***@****
Your normal test results are reassuring. However, the diagnosis of sarcoidosis makes the test results less reassuring because none of these tests are very good at diagnosing cardiac sarcoidosis.
Hope that's more clear.
Thank you and God Bless!!!