Hi I also have myoclonus (mine is spinal myoclonus) and would really like to connect with you on this condition. Mine has totally spread these last 2 weeks. Please feel free to write to me. auntlolo Take care. I understand what you are going through.
I found out that it wasn't a tumor of any kind. I eventually found a different neurologist bc he was closer to where I live, and he said that most of the time myoclonus is just idiopathic, doesn't have a cause that can be found. Mine get better and worse depending on the amount of stress I have, or how much sleep I get. I'm still not on medication, but I'm supposed to start Topamax next week to see if it will help.
I read your entry about your tests results, and I'm sorry to say I don't understand much of it either. Your doctor didn't explain it any further? I'm sorry you haven't been able to get a real diagnosis. It can be really frustrating, I know. Hopefully they will be able to figure something out at Mayo.
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