I tried doing a quick video yesterday to announce that I start Lemtrada the week of the 21st. I meant to post this yesterday but I forgot... As I will mention in the video, I am sorry that I seem so fatigued in the video when I talk, thing is I seem exhausted because I am. 6 more days till my first infusion!
OK so the last few days have not been all that great. So yes, I have been dizzy and still am. That was not a random episode, this is my new "baseline". I can't say I was throwing up all day but I wanted to. Eating was impossible for a bit; I was so nauseous, I would just stand there salivating as if I was about to vomit but I was able to hold it all down.

- Sorry, I have not been able to think and typing is still so difficult... It has been so hot, even a bath full of ice water does not last very long before melting into a room temperature water... -

I have also been dealing with really bad insomnia for the last few days. 3 Percocet, 2 Benadryl and 2 Klonopin all at once before bed time is still not enough. I would be up wide awake till 3am or so... Luckily last night I picked up some more cannabis extract and though I am still not back on track with sleep I finally got some relief last night.

I see my neurologist tomorrow, not sure what for but it was called in yesterday so I imagine it has to do with the skin check I need before Lemtrada. I will also take care of all my blood work I need. Getting closer yet it still seems so far away.

Anyways, I feel like crap and can't think but I wanted to write down the recent happenings before I forget. I will update some more later.
I was hoping that after that last round of steroids I would slowly see some positive progress in my health. Guess not. I woke up feeling so dizzy today! At first I was in denial but at this point I am certain that I have not been this dizzy ever. I barely move my head left or right and it feels like the world keeps moving even after I stop my head. Tracking my eyes is so difficult; I am typing on the computer and I look up on the screen for an icon of some sort but it takes me forever to find it. It’s like my eyes have to slowly scan every inch of the screen! Reading is not easy either. Walking is miserable; I feel like I am going to fall in whatever direction my body is leaning. My legs feel week, which also makes not falling over hard because I have no strength in my calves to push against my toes to properly orient myself. Still, the worst is the dizziness. I feel so dizzy and almost lightheaded just sitting here not moving a single inch. Again, it’s like I was spinning in a swivel chair and abruptly stopped to try to get up and walk away. 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. If I lie down on my stomach propped up on my arms with my eyes closed and my head down I can feel my vestibular system going crazy; everything spins and I am overcome by such a strong sense of g-force. I am really over this crap…

Blog Archive



Follow by Email