I had never heard of Sarcoidosis until a rheumatologist told me that was what my chest x-rays indicated in June of this year. My symptoms began this past April with a swollen right ankle. I saw 4 doctors over the next 2 months who could not determine the cause of the swelling. About a month after the right ankle swelling started, the left ankle began to swell, following quickly by knee swelling, and painful elbow and wrist joints. My legs then began to swell and develop dark bruising in spots. I then starting having a severe dry mouth, following by fever and night sweats. What really frightened me was when I woke up one morning in early June and discovered that the right side of my face was paralyzed. My doctor (who thought it might be Lupus) made a number of urgent calls and arranged for me to see a rheumatologist that afternoon. He ordered a chest x-ray which really confused me as my chest was one of the few areas that did not hurt!! I received a call a couple of days later that the x-ray indicated sarcoidosis. I had never heard of this disease, nor have most people I have talked to since. I had to write the name down so that I would remember it by the time I got home to do some internet research! A few days later I met with an Internal Medicine specialist and the Rheumatologist together, and they ordered CT scans of my brain and chest, a pulmonary function test, bone density test and, as my eyes had now started showing symptoms, referred me to an opthamologist. The chest CT scan stated that it was "consistent with Sarcoidosis". The other tests were normal, although my pulmonary function test showed a very slight decrease in lung capacity. I have not yet seen the opthamologist (my appointment is in early September.) I was put on 15 mg. of Prednisone which within a few days began eliminating my symptoms. All of my joint swelling is gone, my salivary glands are now working again, my facial paralysis is almost completely resolved and I am feeling much better. My Prednisone has been reduced to 10 mg. and the Internal Medicine Specialist has told me to wean off of it by going to 5mg, to 2.5mg and then to 0mg within the next three weeks.
My questions are: From your experience with this disease, is it possible that this was an acute case and that this will be the end of it, or is this extremely naive, wishful thinking?
Also, my specialists have referred me to a thoracic surgeon to have a mediastinoscopy to confirm the diagnosis. Is this a good idea, or should I wait to see if, after I have been off of the Prednisone for a time and do not have recurring symptoms, this has been an acute, one-time episode. Any suggestions? I have been reading this excellent forum for a month or so, and value the opinions and experience of all of you.