Lemtrada Coming Up – So Fatigued…

First of all I am sorry that I just have not been doing much
writing, I have not been feeling great and you would think writing would be
easy with fatigue but I can’t even think! So this will be short.
Tuesday marked the 3-week mark meaning I only have 3 weeks
till I can do Lemtrada (since you have to wait 6 weeks after the Zoster
vaccination to do Lemtrada). I don’t have an exact date set for my infusion just
yet but I am guessing it will be the week of the 31st so I can have
a full work weak to get Lemtrada (5 days).
I have been so fatigued lately, more so than I have ever
been. I decided to play with Provigil some more; I am taking it every day for a
week to see what happens since I never gave it more than 2 days. So far I am
not entirely sure. There seems to be a “crash” regardless of whether or not it
gives me any sort of boost. I think, at the most, I feel like I drank 3 cups of
coffee at once. So at the least it is a lot easier to swallow one pill than
drink 3 cups of coffee haha…
Something else I am noticing is my legs are getting weaker.
Maybe that is because I am sitting at the computer all day? I really only
notice it when I walk up the stairs. For that moment in-between steps when I am
on one leg it feels like I am going to collapse. I know I need to work that muscle
out but I am just so tired! So we will see, I am trying to work some stuff out
because I wanted to do as much as I could before Lemtrada so I have a better
baseline to improve from. Unfortunately it feels like I am still slowly
declining; vision, balance, strength, cognitive function, etc.
Also, I saw that neuro-ophthalmologist again the other day.
Waste of time if you ask me. All he did was spit out condescending remarks
about optometrist who did the same test he wants to do (but obviously can not
do them as well as he can) and how they are not a part of my medical team
because they are doing nothing to treat my problem. I find that interesting
because what is he going to do? Nothing… because there is nothing he can do. I bit my tongue and said nothing
because I am not sure if he is a close colleague to my neurologist and also
because I don’t have the energy to even try to care enough to argue. Oh yeah,
also, every time I had a question about oscillopsia he would interrupt me to
explain that oscillopsia has nothing to do with the eyes but instead the
cerebellum as if I didn’t already know that and I didn’t hear him say that the
first 5 times. Ugh… Egos…
Another random event; I was so nauseous yesterday. Nothing I
took helped until I ate some cannabis. Wow that worked amazing. Nausea was 100%
gone; no wonder people on chemo use it! I did take note of a couple things I
noticed while on it that I never really noticed before because I usually just
go to sleep right away. I noticed with my memory that if (let’s say) I was
watching a movie I could only remember the scene I am in but I can’t remember
how I got there? What was the previous scene? Then when I move on to the next
scene I forget about the one scene prior that I could previously remember. It’s
like my short-term memory space was even shorter than usual! I also noticed a
feeling of pins and needles in my hands but not the bad kind. It tickled. So
when I lied down I just focused on that feeling and it just knocked me out.

I am trying to work on a video right now to get ready to
document my experience on Lemtrada but it is not going well. After about a
sentence or two I loose my train of thought. So in the meantime be sure to
click on the multiplesclerosis.net link up top to read my latest articles!

2 thoughts on “Lemtrada Coming Up – So Fatigued…

  • August 6, 2015 at 6:16 pm

    Matt: Marijuana. Legal in Cali. It will help you.

    • August 10, 2015 at 4:49 pm

      Haha read my last few posts. I am on it and looking to start a CBD extract :p


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