Wednesday, March 27, 2013

Update 3/27

Tested positive for JCV. I do not plan on taking my chances with PML and go on Tysabri anyways.
Considered canceling MRI this week because it feels like I will be in another stand-still for a while until new wave of drugs come out. I will be going anyways because this is why I moved here. Do it right and get it over with. Document the decline.

I had lost all vision in the right eye. The blurriness was very dark and distance made no difference. Could not see the largest letter put up to the eye. Also had increased mobility issues.
Doctor put me on three days of Solu-Medrol. Located an infusion center in-network and started the steroids.
I couldn't have asked for a nicer staff at the infusion center. I did one day in the clinic and the following were intended to be done at home but there was an issue with a home care nurse in-network, so I went to the clinic without issue.

Solu-Medrol tastes like shit. More like rusty metal than shit but its shitty.
I don't know if it caused a body temperature change but my body was in pain. Legs more than the rest.
Hard to say if the steroids kept me up at night or the leg pain, but very little sleep.

After three days the vision in my right eye has gotten better. The dark contrast is gone, and replaced with a bright contrast that grabs the light and spreads it, almost a milky haze. Still blurry but I will take that over darkness.
I am extremely tired. Slept through most of the weekend and nearly any hour I wasn't working this week so far. I read that it is not uncommon for someone coming off the steroids to feel this tired. Hope it passes soon, work needs to be done.


  1. I am very glad to hear that the steroids makes you feel better. And also glad you met nice staff where you went to get it done!! I hope you get the chance to rest during Easterholiday, which I hope you have....
    Wish you all the best

  2. Hey. Haven't heard from you in awhile. how ya been?