Thursday, April 18, 2013

"Head full of MS"

Completed my first MRI in two years a couple weeks ago. Results came back last week and I have a "head full of MS" with new and active lesions both in brain and spine.
Can't say I am surprised. The progression so far translates to the images..

I signed paperwork to start Tecfidera/BG-12. I am running out of options and not much to lose.
Biogen offers a $10 copay so drug cost is not an issue at the moment. I hate the idea of taking something that was just FDA approved even though the active ingredient has been around a long time. I also hate knowing it was used to prevent mold.

Working as much as possible. Trying to keep up with the wave of bills from MRI, steroids and doctor visits.
Really burnt out on the monotonous loop I am in. Work, hurt, repeat. Its difficult to change this up much.

Right eye is still blurry and legs do not work very well.
Drove myself to the store today for the first time in over a month. Light spreads in the eye getting really bright. Do not feel comfortable driving while the sun is out, needs to be cloudy. I wont try at night since its hard to see as a passenger.
When eyes are closed, I occasionally see a flash in right eye, looks like white nerves.

I will be moving again around spring/summer next year if this as good as it gets. Moved here to see a specialist and update my shit. Since I wont be taking Tysabri, I have no need to a big city. I will only be seeing a Neurologist a couple times a year. I have a medical history where I can probably request any drug that comes out from a neurologist and likely get it.

The will to get up daily and get it done always seemed involuntary. Its just what had to be done and I did it.. Seems less involuntary as time passes. The struggle to continue has been the worst 'symptom' yet.
The idea/fantasy that it might get better has faded. I doubt there will ever be a cure in my lifetime, much less something that reverses the damage. Just another lab rat...