mattsms.com

It’s almost like trying to walk on a boat passing through a storm, everything feels like it is moving. When I turn my head to the left while lying on my back a rapid horizontal nystagmus is triggered and if it is positional like that then that would suggest something “mechanical” (like a calcium crystal in the inner ear canal breaking loose and moving around) but that would not explain why I have a difficult time tracking with my eyes when (for example) trying to read from left to right. Balance is achieved through a combination of vision (it looks like I am upright), vestibular function (it feels like I am upright) and proprioception (the floor feels level against my feet). I will be trying to get some sort of blogging routine going again but for a while it’s going to be a lot of short posts just trying to catch everyone up on the stuff I have not written or talked about.

I tried doing a quick video yesterday to announce that I start Lemtrada the week of the 21st. I meant to post this yesterday As I will mention in the video, I am sorry that I seem so fatigued in the video 6 more days till my first infusion!

I barely move my head left or right and it feels like the world keeps moving even after I stop my head. It’s like my eyes have to slowly scan every inch of the screen! I feel so dizzy and almost lightheaded just sitting here not moving a single inch. As far as my visual acuity goes I feel like there is always a small spot in my vision that I can see through and focus on as if I have tunnel vision and everything outside the walls of this tunnel are blurry and moving instead of dark and black.

This flame represents inflammation and though it may always be there it is usually a small enough flame that no real damage is done, like a pilot light on the stove or water heater. “containing” a flare up and bringing that blaze back down to a small flame but to me they are all just different sized buckets of water used to extinguish the fire. Solu-Medrol may be the largest bucket of water available and though the flames no longer feel like they are burning the damage they did has still yet to be repaired. Point is, right before my 3 days of steroids I could actually feel something going on inside me like when you are getting sick; how you can feel that gross feeling in the back of your throat or deep in your chest.