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.
After that we did some positional tests to see if moving my head a certain way would cause nystagmus and guess what? It did. Usually, it’s only one way if it is BPPV, which is how you determine which ear is the problem. I feel it whenever I am in certain positions looking to the left but not only did that cause nystagmus but turning to the right caused another type (different direction)! We did this while I wore special infrared goggles that made everything look pitch black to me, but the goggles had cameras in them that watched my eyes and displayed them live on a computer screen so any eye movements could be seen and recorded.
In the end it looks like it actually is a combination of a crystal that broke free in my ear and MS (I have a lesion in my cerebellum). What sucks is the crystal is stuck somewhere it should not be so we could not fix it with a simple and quick head maneuver such as the “Epley” maneuver. So I have some basic exercises to start working on that will help both the crystal break loose and also the neurological issue. I’ll do this for a while, see how I respond and then add more exercises slowly over time so we can see what each variable in my treatment does.
Hopefully I can fix this sooner than later but he did tell me that it can take anywhere from 6 months to 2 years. Everyone is different.
On top of that I really need to start working on my body’s strength. My quads are so weak now! I can feel my legs trying not to collapse under my own weight as I step up the stairs, which requires one leg to take all the weight while the other steps up. With everything that has been going on with my health lately I am just so unhappy with my body; more so than usual. So I literally have to rebuild myself. It’s hard because it will take a lot of work just to get me to where I was a year ago and then to get from there to where I want to be? This is going to take a lot of work. I have to develop some sort of health routine based on all the physical therapy exercises I have ever learned and all the regular “working out” exercises I know. I hate working out but at this point I hate feeling the way I do even more.
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.
Bare with me!