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...


  1. I am so sorry!!!
    Maybe the new medicine will be better!
    And I wish you had more people close to you. You will be moving again? Maybe closer to your family?
    Even though it wouldn`t change anything, I wish I could be there for you!
    Take care, as much as you can!

    1. I will be moving at some point. Eventually I will exhaust my resources here and move on. I don't have any family that lives near a medical marijuana state. I will be moving further away from them. I will avoid moving to an opposite part of the country if I can.

      Thank you for writing.

    2. I do understand about the marijuana states....Too bad rules are like that!
      What does it mean to "exhaust my resources"? You know my not-so-good-English....I understand the translation in a way, but what do you mean whan you say that?

      Thank you too for writing!!
      Thinking of you.

    3. I had replied to this weeks ago but it did not post for some reason...

      "exhaust my resources" means I have done what I moved here for. I saw a specialist, got an updated MRI and explored my options.
      There is nothing left for me here. I will move when the time is right.

    4. Ok, then I understand better. When time is right for you I hope you will find a good place to live!
      Have you started the BG12 yet?
      I wish I could be there for you in some way.

      Lots of love

  2. I'm glad you got the copay assistance. At the moment, it looks like BG12 is second in efficacy only to Tysabri, so at least that bodes well. It sounds like you are still having a whale of a flare. Sorry. The advantage of being in a big city is possible access to a big hospital where clinical trials may take place for new meds if BG12 doesn't work for you. Still, I hope BG12 works for you and allows you to move where you want.

    Hope you feel better soon.

    1. BG12 numbers do sound promising, but I have to be skeptical about these numbers. Most things in life are for sale and that includes positive test results.

      Time will tell..

  3. I wish all good things could happen to you!! I wish your world would change, and I hope you feel better with your new medication!!

    Thinking of you!!
    Big hug