Be Back Soon; I Feel So Beat

First of all, I want to apologize for not blogging in ages. While I was having my Lemtrada infused I just felt too ill and tired to write so I did some videos. Afterwards, I was so fatigued for a week or two and though I was slowly feeling better my dizziness/vertigo/oscillopsia/whatever was getting worse. Now it is to the point where it is difficult to walk. Just trying to “navigate” around my room causes me to stumble and sometimes even fall (luckily I have a nice soft bed to land on). Even when I am perfectly still thing are swirling. It’s also like I just can’t focus my eyes! It’s horrible, I can not even explain it simply.

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Oscillopsia, Vertigo, BPPV; Trying to Get Back On Track

I am not even sure where to start… it has been so long… hopefully you have watched my videos because the whole Lemtrada thing really killed my motivation to do much writing. That and the oscillopsia/vertigo thing I have been dealing with. As far as Lemtrada side effects go I am feeling fine. Everything feels back to how I felt before Lemtrada so we will see over the next few months if I experience any positive changes. Now the vision. Since around February (2015) my vision (and resulting balance) have slowly got worse. I was able to do most anything until recently when even walking became difficult. It’s almost like trying to walk on a boat passing through a storm, everything feels like it is moving. Forget driving! Eventually, I started wondering (for multiple reasons) if it was even MS related? Was it Bilateral Paroxysmal Positional Vertigo (BPPV)? 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. My eyes “skip” suggesting something is wrong with my vestibuloocular reflex.. Could it really be a combination of MS and something else going on in my ear? What are the odds?

Well, today I saw a physical therapist who specializes in vestibular therapy (and is an instructor on the subject at Loma Linda University) and he did some test to try to figure out what was going on. They have a machine that you stand in front of (well it sort of wraps around you so you can’t see anything in your peripheral vision except the screen) that displays a computer generated environment and also the platform you stand on moves based on how you move. There are different tests; one may track which way you lean based on a moving environment and another causes the platform to shift around based on how much you move and so on. It was horrible because it basically eliminates your sense of balance. 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). So the machine messes with these functions to show how strong each is. Since all my senses are kind of weak right now I had a hard time standing up and not falling.

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