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.

Hello and Welcome to Neuro Talk Sara, yes the first year can get a bit mind boggling, and the adjustments can add to the weight of MS.

You have come a wonderful site for support answers ideas and questions, feel free to jump in any where and post talk chat. here is a link to the MS forum,

http://neurotalk.psychcentral.com/forum17.html

you will find many wonderful and kind hearted people here, you have come a to a great place, to help with all those thoughts, again welcome to NT

Hi Sara and welcome to Neuro Talk. Glad you found us.

I see Frank gave you a link to start with. Feel free to check out all the forums.

There are alot of wonderful people here and loads of information:)
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hello sara ... welcome to NeuroTalk ... surf around and join right in ... you will find alot of friendly and helpful people here ...

Sara,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Hi, Sara! :Wave-Hello: Welcome to NeuroTalk!

I have never heard of this, have they offered you any long-term treatment or guidance?

I vote yes on grad school, it's a blast and you'll love it! :)

Hello Sara and welcome to NeuroTalk. Hope you take a look around and make yourself at home. From all that you have been through, you still seem to have a good attitude, which is key. Glad you found us and please join in anywhere.


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