My primary melanoma was on my thigh in 2008, with the sentinal lymph node positive. In 2009, I had a metastatic lesion on my left arm which technically makes me Stage IV. Since then, I've had a long list of problems: cardiovascular disease, transverse myelitis, pulmonary emboli, pneumonia, etc. In October 2010, I developed weakness and sever pain and numbness in my legs and feet, mostly on the left side. As it progressed, it has affected my eyesight, my hearing, my ability to walk unassisted, and has caused me continuous pain. Both my neurologist at home and now an autoimmune neurology expert at the Mayo Clinic have diagnosed me with a paraneoplastic neurological syndrome with brainstem symptoms, myoclonus, myelopathy, nueropathies, and dysautonomia. Since I have gone through rounds of steriods and IVIG without any change, I am now taking IV Cytoxan monthly. I was just wondering if there was someone else out there with any similar experience and a more clear idea where this might be headed. Thanks so much.View Thread
I went to the Mayo Clinic in Rochester, MN. You should go to autoimmune neurology as they are specialists in this disease. On Mayo's website there is information on their treatment of paraneoplastic syndrome. My doctor was from Dublin, Ireland but I am drawing a blank on his name right now (maybe part of disease?). The earlier the treatment, the better the results. Unfortunately, there is no cure. Only measures to slow down its progress. Sometimes when the underlying cancer is treated, the paraneoplastic syndrome resolves as well. Good luck and God bless you on you and your cousin's journey.View Thread
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