Guest guest Posted April 20, 2011 Report Share Posted April 20, 2011 Hi everyone, I am new to the group. I do not have neurosarcoidosis, however, my mother does. She went undiagnosed for 10 years. It started with double vision in 1999. Then went to 6 nerve palsey in the other eye. Then went to not being able to raise her arms above her shoulders and weakness in her legs. She had several bouts of encephalitis. In 2006, she collapsed on Christmas morning due to hydrocephalus, and had to have a shunt put in her brain due to the left ventricle collapsing, still at this point, undiagnosed. In 2009, she had a spinal tap done for the 3rd time, and found she had chronic meningitis, and her neurologist sent her to see her neuro-surgeon for a possible brain biopsy. That was scheduled in December 2009, and was diagnosed as neurosarcoidosis. She was immediately started on prednisone and the doses started to get higher, but she could not tolerate the higher levels. After 17 months of being on prednisone, a dr in Birmingham suggested she try chemo(cyclophosphamide). She has had 2 rounds of that, and is doing terrible. Back in March, she started the chemo and was also on coumadin for a blood clot in her leg, and she started to bleed out(nose, mouth, bladder) and was sent to the hospital. She was in for a week to reverse the effects of the coumadin, and I couldn't believe they were sending her home. She was in no way, shape, or form to be going home. So for the next week, she deteriorated, and wouldn't eat or drink and only slept. We took her to her GP and she admitted her to the hospital for observation. She ended up having chronic meningitis again. She is now at home on hospice care with no meds to suppress her neurosarcoidosis, and I am at my wit's end!! I don't think my step-father wants to get her any better. Btw, she was sent home with hospice because her GP thought she would receive better rehabilitation with hospice instead of home health care. Does anyone have any suggestions about any meds?? I'm thinking she may have to go back on prednisone. Please help. Thx Quote Link to comment Share on other sites More sharing options...
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