Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Hello everyone! I'm Boo and I have neurosarcoidosis. My family always said that when I get a disease...I always go for the hardest to diagnose and to treat. After 2 years of progressing peripheral neuropathy in my feet, thigh, knees, hands, and transient facial palsy, I finally found a doctor who was willing to be experimental and put me on hydroxychloroquine. So far...not much change...almost feel worse but the Dr says it could take up to 5-6 months to see any real change. I walk with a cane and I am on permanent disability. I survived through 9 months of prednisone for bilateral hilar myopathy with granulomas surrounding my heart and collapsing a portion of my lower right lobe. I am looking into starting a sarcoid support group in my city...we have nothing here so far and absolutely no sarcoid specialists. If this treatment doesn't work...I am pretty sure I will be on my way to s Hopkins to get to the bottom of this nasty disease. I am so glad to have a place to come and vent and a place to be one of many who are just like me. Thank you. Boo Quote Link to comment Share on other sites More sharing options...
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