I've been absent for quite awhile for a number of reasons. Reasons I'll try to explain.
I received a semi-diagnosis from Mayo Clinic in regards to my seizures. In medical terms: "Voltage-gated potassium complex antibodies with possible autoimmune encephalopathy." It's a relatively rare disorder involving an antibody in my blood attacking healthy brain cells... Autoimmune Epilepsy.
They're going to start an IV methylprednisolone trial next week at Northwestern Memorial. I'll have the first three treatments while admitted to the Video-monitored EEG unit at NW, then once a week for twelve weeks a nurse will visit my house to administer the treatments. After the twelve weeks, I'll go back to Mayo to see if there has been any improvement. Improvement will primarily be gauged by a pretty horrifying psychological test... the first one I did back in December was just a disaster.
Going back to last year, I can say there was a lot of lost time. I spent my Thanksgiving, Christmas and New Years having my body scanned, blood drained, spine tapped, and psyche picked apart. I understand that it's a essential, but it's physically very painful and emotionally devistating.
I'm still having seizures and they're getting stronger and stronger. I know the VNS in my chest is helping slow down a seizure when it starts, but lately all it's been doing is keeping me awake long enough to feel how truly painful they are.
The title of this post pays tribute to those who've pushed me to document this experience, not only for me, but for others in the future that these posts could help.
Thursday, February 14, 2013
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