Heat, Dizziness, Negative Progression and Aubagio

Wow. It has been hot and it’s only getting hotter. We have
been in the triple digits (-37+ Celsius) and just trying to maintain the
temperature in my room was at first
hopeless! It was hitting 79 (26 Celsius) in here with both the house A/C and my
portable A/C on full blast! It really didn’t help with me feeling horrible…
Luckily I have got that figured out. I repositioned my A/C, messed with the
venting, put a box fan by it to help blow air into the corner of my room
(rather than letting it just settle) and mow I can keep it between 70 and 73
degrees (21-23 C), which feels fine to me. I still prefer colder but well,
people in hell want ice water right? So battling the heat has been miserable
because even though I got my room figured out it is still hot everywhere else.
The rest of the house is noticeably
warmer outside my room and because it is so hot outside I have been trapped in
my room. Siting and lying down all day is certainly not helping my health and I
am so stir crazy!
On top of that I can barely function because of how dizzy I
am. Oscillopsia, vertigo, dizziness – I don’t even know what is what anymore.
All I know is I have a hard time seeing and moving around. I think the easiest
example (but not that spot on) would be to say that everything looks like I
just spun around really fast in a swivel chair and suddenly stopped to
immediately try to get up and walk around. I don’t feel dizzy as much as I see as if I were dizzy. Everything seems
to still be in motion, especially when I move my head or eyes. But where it
used to be pretty limited to occurring when I move my eyes/head now it is
hitting me while I am sitting still making reading, the one thing I could
comfortably do, difficult. I try to read an article online an my eyes skip so
much I loose my place and find myself in the middle of the wrong paragraph.
Typing is no fun either; I double tap keys or hit more than one at the same
time. Not only has typing been tricky physically
but also mentally! I have (in the
last few years) always had this weird thing where I leave the suffix off a
word. I might leave an “s” off the end of a word, an “ed”, “er” etc and lately
it has been horrible! Or I will write
the wrong word completely! What I am thinking doesn’t seem to come out right!
“Well why don’t you just use something like Dragon speech to text software?”
Because even when I speak I can’t get
my thoughts out! I start saying the wrong words or tripping over my words and
occasionally slur so it is equally frustrating. So I am trying to slow
everything down but it feels like my thoughts are trying to race out of my head
only to all bottleneck at the exit. So everything is progressing negatively
instead of getting better every day. I hate this.

Aubagio was really giving me some flu like symptoms at
first. I managed it with Ibuprofen and now (over a week in) I seem to be doing
OK without it. I just can’t wait to start Lemtrada. I know it will more than
likely make me feel worse for a while but I just want something to change! I
want to feel like I am doing something… My neurologist is certain this is just
a bad relapse and that I will get better. He said not to sell my car (yes, I
asked haha) and just be patient. It’s just hard, it’s been 6 months of getting
worse and worse and the days feel so long. I am a pretty patient person but the
only time I am not constantly aware of my symptoms is when I am asleep! Kind of
hard to keep my mind off of it…

4 thoughts on “Heat, Dizziness, Negative Progression and Aubagio

  • June 25, 2015 at 12:20 pm

    Canada just published data on Lemtrada. They approved it in 2013.The results are positive.Your doctor has seen enough people relapse and get better.Hard as it may be ,I would replay His words in my mind ;over and over again.Canada now has experience over and above us.I know your frustrated and scared,but at least now there is a treatment that promises to put you many rungs up the staircase.And that's just now ,remember anti lingo is coming up at bat.One thing, I'D DO THOUGH is make sure you don't have a mild bladder infection .That happened to me one time and it made me worse and I didn't even know I had it.I pray for mental peace for you during this difficult time.I think things will go well.

  • June 26, 2015 at 4:28 pm

    Thank you, yeah, I am frustrated, not scared, just frustrated. I try to think about what he and others have said about getting better but when you wake up worse than the previous day every single day for 6 months, it is hard to imagine how the path will change without leaving permanent damage. I try to HOPE but I have been running on fuems in the hope department. I hope Lemtrada at least improves my vision and stop the negative progression of MS and then when Anti-lingo-1 comes out I will hope for IMPROVEMENT of symptoms that have been "permeant". I am trying to be patient but the days are just so long right now. I wish I could just be put in a chemically induced coma for a month or so haha…

  • July 4, 2015 at 12:17 am

    Hi Matt, I just happened upon your blog and wanted to say hello and thank you. I am sorry for your suffering with MS. For me, selfishly, it is nice to be able to read about someone who openly shares their experience because it helps me to know that someone else can relate to my own.

    It is a relief of sorts, actually. I have found that it is one thing to get support from caregivers like your doctor or MS nurse, OT, PT, etc, but it is another thing altogether to talk with other patients. Medical staff may try to help, have the best of intentions, and have lots of book knowledge or clinical experience (and all of that if you're LUCKY), but they just don't KNOW this disease until they have lived it. Your blog reminds me of the importance of and value in staying connected with other patients. It can be so helpful to hear someone put into words the very things we find frustrating but which we live with in isolation because no one else can relate.

    I read your blog and think…yep…yep…yep…that's so true…good for you…yes, I feel that way too….finally someone said it!…., etc., etc.

    So, anyway, thanks. I feel affirmed by your words and am sure others do too.

    I have one additional comment, and I don't want to be a bummer, but since it was raised earlier in this string, I feel compelled to chime in. Unfortunately, Anti-Lingo isn't even in Phase III yet for clinical trials so it will be several years out before that study is enrolled/ completed/ data analyzed/ reviewed by regulators/ approved, ….and that is IF the data is positive. (Please, God, it will be.) There are other re-myelinating agents being investigated, though, too, so that is not to say we shouldn't be optimistic.

    Best wishes to you and everyone out there who is on this same "journey."

  • July 4, 2015 at 1:42 pm

    Hi, that is not selfish by the way. That is the point of all this! It's comments like this that motivate me to keep writing. Oh and yes, I know that "anti-Lingo-1" is FAAAAR from being approved, it was just an example, thinking long term you know? Haha anyways, thank you.


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