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Old 09-26-2008, 11:29 AM #1
saraeanderson saraeanderson is offline
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Join Date: Sep 2008
Posts: 1
15 yr Member
saraeanderson saraeanderson is offline
New Member
 
Join Date: Sep 2008
Posts: 1
15 yr Member
Default 2008: The year that ate my brain

Just looking for a little support in a crazy year that's left me stuck at home and completely overwhelmed - at the beginning of this year, I was 25 and basically had no medical history. It all started summer of 2007 when I completely stopped menstruating, and started a long episode of depression. The depression only got worse as the weather got colder, and along with that came memory loss and inability to concentrate. And no one could figure out why I wasn't menstruating, but now I know I had a demyelinated lesion on my thalamus flare up, and I was having headaches every day (this was quite unusual for me), and incredibly hypersomnic. GP decided it was time for an MRI, and up came a huge contrast-enhancing lesion in my right-frontal lobe, so I immediately got to a neurosurgeon who advised that I get the thing scooped out, or that I at least get a biopsy, since it seemed kind of weird to him - and that was a good intuition on his part, since it was a tumefactive demyelinating lesion and not a tumor (phew!). I went for the scooping, thinking that if they were going to be in there, they might as well get the thing out - I also got to decide what to do while I had a huge thingie in my brain, and lots and lots of edema, neither thing being very conducive to serious thinking. After a week of decadron, an MRI showed a much smaller lesion, which stopped the surgery short. Luckily, I've got a husband who is great in an emergency, and has experience in social work, and I live near most of my family, so I had plenty of support. My memories of how this process played out aren't very clear, but I remember waking up with a hole in my head and learning I wasn't about to die or anything, just that I probably had a chronic, incurable, possibly-disabling disease. I live in the middle of nowhere, and got hooked up with a neuro specializing in demyelinating diseases, whose clinic is in a town two hours from where I live.

The good news is that I came out of this with almost all of my cognitive function intact, and still have yet to have any MS-type symptoms.

Oh, and the diagnosis came out as marburg variant MS. And there's more to me than my medical problems, of course. I'm a pretty prolific blogger, love to cook and eat, and am fairly politically active. Before my life fell apart, I was working in molecular biology, and I'm trying to turn this into an opportunity to be a big girl and actually go back to school.

Heck, if I am brave enough to let a complete stranger cut a hole in my brain, I can apply to grad school.
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