Dr. Jen Caudle, a board-certified osteopathic family physician and associate professor at Rowan University School of Osteopathic Medicine says that the diagnosis can be tricky.
“A patient with sarcoidosis in the lungs may have coughing, wheezing or chest discomfort, and that might be mistaken for asthma instead of sarcoidosis,” Caudle explains. “Other symptoms that people may have include fever, pain, fatigue, rash and headaches. These symptoms sound like they could be part of something else, so we may not think of sarcoidosis.”
Sarcoidosis itself can look differently in different patients. Crouser says that there are basically three clinical patterns of sarcoidosis: mild disease that’s barely noticeable, disease that flares up occasionally, and disease that is always active, requiring treatment to keep it at bay.
But, even once sarcoidosis is suspected, diagnosis is not straight-forward.
“There is no reliable laboratory test to identify who has sarcoidosis and who does not,” Crouser says.
Instead, the diagnosis is made with a combination of imaging — such as CT scans, MRI scans or PET scans – as well as lab work, biopsies, and possibly consultations with specialists.
Caudle says that one of the things that her newly-diagnosed patients with sarcoidosis have in common is that they had symptoms that lingered.
“If the symptoms keep recurring and they don’t seem to go away, or you don’t seem to feel like yourself or go back to normal, it’s a reason to see your doctor,” says Caudle. “The biggest thing is trusting your gut.”
“Patients are sometimes their best advocates,” Caudle adds.