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Tuesday, September 27, 2016
I had sarcoidosis in my lungs and lymph nodes 1970-80. It was devastating but prednisone eventually calmed the inflammation, and I survived with significant lung damage. Now, almost 35 years later, I have symptoms of neuro-sarcoidosis but the doctors at Jefferson Hospital in Phila. seem hesitant to treat it because I also have an inoperable tumor at C-1,2 which may be a mengioma ( I had one removed at T-12, L 1-2, four years ago.) The symptoms are increasing - blurred vision, vertigo, pain in my scalp and headaches, etc. They say the tumor is not causing these symptoms, but... Can you recommend someone/someplace to go for treatment?
This is a complicated situation, and you will likely require close follow-up by your doctors. As such, it is best to find a local doctor to manage your disease. It is very reasonable to request a second opinion. I would begin by asking your current doctors. Most good doctors would be happy to refer you to another expert and there are advantages to optimizing communication among those who have been caring for you to avoid delays in diagnosis, redundant testing, and misinformation. In this case, you will require consultation from a neurologist or neurosurgeon familiar with sarcoidosis. Sarcoidosis and brain tumors can be difficult to distinguish from one another and the management is very different for each.
If your present doctors cannot or will not refer you to another physician, then it would be reasonable to search for a sarcoidosis specialist in your area to help you. The following website lists doctors at University of Pennsylvania who specialize in the care of sarcoidosis patients:(http://pennhealth.com/Wagform/MainPage.aspx?config=provider&P=PL&S=PULM&SS=0&Z=&SL=&SI=&submit=Find+Provider).
They happen to be pulmonologists (lung doctors), but would be familiar with disease occurring outside of the lungs and could refer you to the appropriate specialists for evaluation of your central nervous system disease.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University