I too have neurosarcoid I was diagnosed in Oct of 2005 after a brain bx, after almost three yrs of symptoms I finally was referred to a neurosurgeon at the cleveland clinic he had reviewed my MRI's and 1 week later I was scheduled for surgery. Very nervous and confused for years with symptoms of dizziness and weakness, memory issues, slurred speech, tingling in extremities I finally found out what was going on with me. For a long time my OLD neurologist ( no longer seeing!!!) keep telling me it was my migraines and stress, that was giving me all these symptoms. I still have so many questions re: this condition but I think I am on the right track. I am currently being treated at the Cleveland Clinic by a Dr. who specialty is Neruosarcoid. The medications that I am on for the Sarcoid are Methotrexate, Prednisone, and every four weeks I go in for an infusion of Remicade. This seems to be helping, my last MRI still showed the lesions and enhancements but they have shrunk somewhat. They want to do 5 more infusions and then check another MRI I am keeping my fingers crossed. I wish all of you out there suffering from this horrible monster that has taken over our bodies and spirits All of my prayers and thoughts. I really don't know what I would do without all of your stories. I know that I am not alone in this fight.
All of my prayers to you,