How Visual Symptoms of MS Affect Me
MS visual problems are a daily challenge
Over time the damage that cannot be reversed can start to accumulate, making these visual symptoms a daily challenge even with glasses/contacts. And some people with MS eventually develop (or even start their MS battle with) other visual symptoms than optic neuritis, and those can all be debilitating in their own ways.
I myself live every day with an assortment of symptoms that affect my vision, so today I would like to go over them and talk about how they impact my life and some of the things I do to overcome them (or at least cope with them) the best I can.
Optic neuritis doesn’t just cause blurry vision
As I mentioned, a common symptom of MS is optic neuritis and for me, that symptom was among the many symptoms that popped up out of nowhere in the weeks leading up to my diagnosis. In my case, it was just an overall blurriness that was (at the time) pretty much completely resolved with steroids and a pair of glasses. But optic neuritis doesn’t always just cause blurry vision. For some people, it can also cause color blindness, pain “behind” the eye, flashing lights, or even a complete (or partial) loss of vision in the affected eye.2
My experience with optic neuritis
I say “the eye” and not “the eyes,” because optic neuritis usually affects one eye at a time.2 As is the course of the disease, this symptom (for me) has only gotten worse over time as each attack (AKA flare-up or relapse) has left me with a small amount of permanent damage (long-term disability). So in the time since my diagnosis, my vision without my glasses has gotten progressively worse.
Luckily, I have never experienced the pain that many people get, but I have had nights full of bright flashes of lights while I lied in bed trying to fall asleep. I've also had short periods of time where the vision in one eye seemed “desaturated” like all the colors around me had been dulled out.
Developing a blind spot
Now I also mentioned that optic neuritis can cause a complete or partial loss of vision. After a while I developed a small blind spot in my left peripheral which, now that I think about it, I am honestly not 100% sure is due to optic neuritis or not. I think I just have always assumed that it is, so I never really looked too deeply into it. At first I really only noticed this while I was driving; cars in the oncoming lane to my left would basically vanish for a split second when they would pass through that small spot.
A visual field test
When I told my optometrist about this he did a “visual field test” which basically involves you covering one eye at a time and staring at a mark in the center of a large, concave, plastic dome thing that makes it look like you are in a bright, empty, white room. Throughout the test, tiny dots of light randomly appear across the dome (which completely covers your peripheral so that you can’t see outside of it), and every time you see one you press a button indicating to the machine where you can and can’t see.
This confirmed that there was a spot in my left peripheral that was basically completely blind, because I could not see any of the small dots of light that appeared in that area of my vision. I actually don’t drive anymore, so I really don’t notice this unless something moves across my line of sight and I don’t stop looking at whatever I am looking at.
Other debilitating symptoms
Now onto what I would say is one of my most debilitating MS symptoms of all: oscillopsia/nystagmus. At this point we are crossing into a territory where this visual symptom of mine is closely tied to vestibular and maybe even cognitive symptoms that I deal with, so I will try to keep the focus on the visual aspect. But the line between these symptoms is kind of blurry, so it may be difficult (blurry…no pun was intended, but now that I see it, I will just say that it was me trying to be clever, haha... now that I see it); ok, anyway, oscillopsia. Oscillopsia is a really weird symptom that I have never felt able to adequately explain to people.
What is nystagmus?
So first I need to make sure we all know what a symptom called nystagmus is. There are quite a few different types of nystagmus as well as different causes, but right now that doesn’t really matter so long as you get what it basically is. Go on YouTube and look up an actor by the name of Pruitt Taylor Vince; in fact, just put in his name and nystagmus in the search bar and watch a few clips of him while paying close attention to his eyes. You will notice that they are constantly shaking left and right. That uncontrollable eye movement is called nystagmus, and I am sure you could imagine how navigating your daily life while dealing with that may be. I myself get a minor nystagmus when I look to my far left. But I usually don’t have any reason to do that so it’s no big deal to me, but here is where it gets debilitating.
What is oscillopsia?
Oscillopsia is a type of nystagmus where the world appears to be moving even when you are perfectly still (including your eyes). But now we are getting pretty close to that line between visual and vestibular symptoms, because it doesn’t just LOOK like the world is moving but it also FEELS like it is. I guess it is similar to the sensation of vertigo, and sometimes it is so severe (it gets worse with head movement or an excess of visual stimuli) that I have to sit down or else I will fall.
When this happens, you can usually see my eyes shaking left and right like Pruitt Taylor Vince’s. But sometimes it actually feels worse when it is not all crazy like vertigo, because I will be sitting there just staring at something like the texture in the ceiling and it will look like it is moving when I know it isn’t.
No matter how hard I focus my eyes, there is always a subtle movement to it. And while I have learned to live with it (mostly), I still have times where walking is really difficult just because everything looks like it is moving and also feels like I am trying to walk heel to toe on a large, swaying boat. It really screws with my brain (well, my mind) because for me the subtle movement can make it more difficult to convince my brain that I am actually standing still and that I don’t have to move in a way that would keep me balanced if things were actually doing what they appear to be doing. My brain is receiving a signal from my vestibular system that is telling me to do one thing to stay balanced while my brain is also receiving a signal from my eyes that is telling me to do something completely different!
My story with driving
So when it comes to driving here is my story. In January of 2015 I started noticing this weird symptom creep into my life, but at the time it was minor enough that I was sure I could deal with it and not let it get in the way of me functioning. However, it very quickly got worse to the point where I was starting to question my ability to safely drive. In February of that same year, I got in the car, took a deep breath and told myself that I could do this, it was no big deal. I was driving towards the exit of our neighborhood, and before I could leave I totally jumped the curb. So I stopped and just sat there with my hands on the wheel. I can’t drive. Not like this. So I turned around and parked the car and with the exception of a few times where I wanted to see if anything had changed while I sat in the driver’s seat, I have not driven.
Deciding for myself that driving wasn't safe
It sucks, and for so long, I refused to accept that I would probably never drive again, but at this point, that is a reality I have come to terms with. No one took my license away, in fact, if I went to the DMV right now I would pass all their vision tests with no problem, because they simply do not check for any of the visual issues I have. A flaw in the system if you ask me.
Anyway, I feel better knowing I have my license and could drive if I wanted to, but I am the one who is deciding for myself that it is just not safe for me to drive anymore. It’s not safe for me and not for everyone else on the road. I refuse to be responsible for the death of someone else simply because I wanted to be able to drive myself to the store or grab a coffee. Part of being a responsible adult is being able to recognize that just because you can do something (legally) does not mean you should. Deciding that I was done driving (when I have always loved everything about it) was not an easy decision. But it was the right decision, and I hope that others in similar situations to mine can do the same thing.
Were you misdiagnosed with something else before receiving a MS diagnosis?