Living with SarcoidosisThis section is a place to share stories about Living with Sarcoidosis Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation. You may also Help others by sharing your story. To quickly access health information from your website's browser, download Sarcoidosis I’m a 56 year old male and I was diagnosed with neurosarcoidosis in 1986 following a nocturnal seizure I was put on steroids. My doctor said that steroids can cause blindness but the low dosage I was on should be OK. 15 years later I had a shunt because of normal pressure hydrocephalus a potential outcome from neurosarcoid. Got on with living then again 3rd time? unlucky had signs of pulmonary sarcoid. In between I lost my driving license because of blindness. I was put on prednisone following pulmonary involvement. Realizing I risk of osteoporosis while taking steroids 50mg daily advised to take vitamin D. The problem with taking vitamin D it promotes the granulomas. Have decided to stop prednisone as my vision has worsened!. I’m 1 in 60 out of 100,000. which means it is not financially viable for the drug companies to find a cure. Comments
July 2007
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