Friday, June 1, 2012

Update 6/1

Talked to my neurologist, he thinks the Gilenya may not be working considering the number of exacerbations/flare ups that I have had on it. He would like another MRI done since it has been a year.
Because I have experienced a slight turn around from the initial issues with this current flare up, steroids are not necessary, although they would have put me on them had I called it in right away. Just as well, didn't want to be on that shit.

The next therapy he recommends for me is Tysabri. It is a once a month infusion. Yet another treatment with needles (IV), which I seem to lost my ability to handle.
I am at a crossroads with this. Each therapy has its own way of fucking you up in another way, or in most cases, does nothing to slow progression of MS.
Death is the only cure for this bullshit disease...with my shit luck I will likely live to 90.


  1. I am glad your neurologist is doing something. I hope Tysabri will be much better for you!!!
    I am just curios about one thing, why wouldn`t you take steroids in a situation where it could be helping you?

    Good luck with the new medicine. And don`t loose your hope, because there MUST be something better for you!!
    All the best!!!
    Hugs K

    1. Steroids can be helpful at times, but they also cause their own damage. Since the doctor felt I was on the upswing of this 'episode', it would be best to wait it out, but it was my decision, and I decided to wait it out.

  2. Thinking of you!!
    Lots of love

  3. Is tysabri working?

    1. Have not started it yet, waiting on all of the paper work to finish, including requests for financial aid.