The bad news is when the disease lingers. Long-term sarcoidosis means that a pulmonologist needs to prescribe treatment and long-term care. If left untreated, sarcoidosis can lead to irreversible damage to the tissue between lung air sacs, which makes breathing difficult; impaired eyesight to the point of blindness; kidney and other major organ failure; or interfering with the delicate electrical signals of the heart, resulting in abnormal rhythms and potentially death. The nervous system also can be affected, with the disease manifesting in facial nerves and causing paralysis to that region.
If you visit a doctor, write down your questions in advance and make a list of symptoms. If you know when they began, note that and provide a timeline of any changes. Make sure you know your medications and any supplements you choose. Your doctor will determine what further tests and treatments may be needed.
The office visit likely will start with a close examination of your entire body, including probing any skin lesions if you have them. If you have previously been X-rayed for the condition, the doctor will want to examine those charts to see any warning signs of sarcoidosis that may have been missed in prior examinations.
From there, treatments include further X-rays to determine the extent of lung damage or the presence of enlarged lymph nodes in the chest; a CT scan, if deeper examination of an afflicted region is suggested; a PET or MRI, if heart or nervous system problems are suspected; and a blood test, which will measure heart, kidneys and liver function. Your pulmonologist may refer you to an eye doctor in some cases.
In rare instances, the doctor may recommend a biopsy of the lung tissue or other areas. This seizure of a small sample of tissue will be looking for the small lumps called granulomas, which form as part of the early stages of sarcoidosis. The lung or lymph node biopsy will be obtained with what’s called a bronchoscopy, which uses a thin, flexible tube that is inserted down your throat. The tube contains a camera and can clip off an area of tissue.