How the Visual Symptoms of MS Affect Me and Maybe You

How the Visual Symptoms of MS Affect Me and Maybe You

Multiple Sclerosis (MS) symptoms related to vision are probably some of the most common symptoms experienced by people with MS. Optic neuritis (damage to the optic nerves which most commonly causes blurry vision) is in fact a common first symptom that often leads to an MS diagnosis (or at least the start of the diagnostic process). This symptom in particular usually responds pretty well to steroid treatments such as oral Prednisone or IV Methylprednisolone (Solu-Medrol) which tends to result in the optic neuritis completely or mostly clearing up. But over time the damage that cannot be reversed starts to accumulate making these visual symptoms a daily challenge even with glasses/contacts. And most people with MS eventually develop (or even start their MS battle with) other visual symptoms than optic neuritis which all can 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, one of the most common presenting symptoms 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 minor (or complete) color blindness, pain “behind” the eye, flashing lights (even when the eyes are closed), or even a complete (or partial) loss of vision in the affected eye. I say “the eye” and not “the eyes” because optic neuritis usually affects one eye at a time. 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 as well as 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. 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.

My most debilitating MS 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.

Everything looks like it’s moving

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (23)
  • vj
    5 months ago

    Thank you so, so much for you article about nystagmus. I have been plagued by this symptom for years and have learned to live with it. Mine is usually just a nuisance, but many times it’s accompanied by pain. Unfortunately, it happens with both eyes occasionally. Nothing can be done about it so I just keep going.

  • Bettybeem
    11 months ago

    Matt, excellent article. My eyes, too, have been severely effected. My optic nerves are severely scarred. It turns out IV steroids caused the cataract in my left eye to go totally bonkers. As a result, the procedure to replace the lens was quite lengthy. I have a permanent blind spot in my right eye. Several years ago I had vestibular rehab which also involved visual exercises which helped with some of the symptoms you described. . Both my opthamologists were impressed by the improvement in my vision. I also have depth perception problems but only in judging distances when walking. I can’t perceive dips in sidewalks, nor can i judge distances at curbs and stairs. I also have difficulty seeing objects on multicolored carpets.To prevent falls, i use a cane in new environments, on uneven surfaces, at night, and in inclement weather. My vision frequently fluctuates. I have difficulty distinguishing shades of color.

  • Matt Allen G author
    10 months ago

    I was JUST talking to a friend about this issues, I would describe it as a difficulty to see two different colors/objects that have little contrast between them. Like a black phone on a black table is basically invisible. Phone with a light green case on a black table is SUPER visible.

  • kjmac
    11 months ago

    Matt,
    Thank you for a great story, I’m taking this to my dipshit doctors here in Oregon! They have never heard of the MS black spot I have in my left eye and one is a Neuro-opthalmologist. Both my optic nerves look really sick and they were talking about undiagnosing me. Solu-medrol quit working.
    They tried to tell me I didn’t have an MS episode when I was 14 after our first really warm baseball practice of the year, the whole left side of my body went numb from hed to toe! Vision in left eye blurry too, I was a left handed batter and my hitting was never the same after that. It slowly improved but not back to normal. I have had eye problems for years and my eyes look like a 20 year olds! Field of vision showed two blind spots in my left eye and the MS black dot. The outside and bottom of the eye was kind of bad. I get the flashing lights and both eye pain and can’t sleep. Even nystagmus, just mild. God Bless you Matt!

  • Matt Allen G author
    10 months ago

    If it is literally a BLACK spot in your vision that is not exactly like anything I have experienced, but we are all different I suppose. Either way, it’s SOMETHING and should not be ignored by a doctor… If they do ignore it still, it might be time to see a new doc that CAN identify the issue, good luck!

  • JDeabler
    11 months ago

    Hi Matt-
    You have done a great job explaining optic neuritis and its potential associated complications. In fact, I have experienced much of what you have over the year, minus the Oscillopsia (which sounds terrible…so sorry.), exactly the way and the timeline you described. Optic neuritis was my initial MS symptom with the pain you mentioned, not fun, light sensitivity, peripheral vision loss and nystagmus. After a healthy dose of solumedrol, all those symptoms got better. Being Dx 29 years ago, I had too many optic neuritis flares to remember during the early years, suffice it to say the damage accumulated so over time I did start to notice that I still get unpleasant light sensitivity when I go into certain places, especially WalMart (weird…haha) and have lost most of my vision in my right eye. All that to say once I started a DMT that worked with my body, about 3 years later, I stopped flaring, no more optic neuritis for over 26 years so far. Even with the residual damage from my flares, I feel blessed that my vision is at least as good as it is today. Thank you for writing this post about a symptom so many people in the MS community experience.

  • Matt Allen G author
    10 months ago

    You know, I wasn’t sure if I should mention the light sensitivity or not because I have ALWAYS had a sensitivity to light, since I was a child, so many of the pictures of me included me squinting and covering my eyes. Everything hurt as if I were trying to stare right into the high beams of a car

  • wandaholt
    11 months ago

    I have had m.s. 12 years and I was quickly diagnosed with acute and severe optic neuritis which resolved. But nystagmus and oscillation and blurry vision are often present. I also stopped driving years ago because I realized the danger of driving. My eyes start off o.k. when I start to drive but my depth perception is nil and I feel as if my eyes go into a trance and cannot refocus on the road lines or signs.

  • Matt Allen G author
    10 months ago

    the depth perception bit while driving is scary, it’s bad enough when walking!

  • AnywhereOutOfThisWorld
    11 months ago

    I was diagnosed with Multiple sclerosis in late July of 2017 after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein ‘o’ bands. It wasn’t vision issues for me that led me to an MRI of my brain being ordered, I went to my primary care doctor in June of last year, because I awoke on May 18th with a bad speech slurring issue and also my right side of my face felt stiff and I couldn’t smile normal. Eventually the bad slurring cleared up as did the face stiffness, the MRI of my brain revealed lesions and the Spinal Tap, revealed ‘o’ bands and quickly came my MS diagnosis. My neurologist believes due to the amount of lesions and ‘o’ bands, that I have had MS for quite some time. Now that I think about it though there were always odd vision symptoms that would creep up from time to time. I always wore contacts when I went out and glasses when I am home. I would get that vision glare effect if I was on my laptop too long, which I had heard people get so I didn’t pay that much mind. I also would get double vision from to time and still do get it especially when reading a typed document. If I am filling out forms, I get a headache and the words go blurry or doubled up. Not to mention if I am filling out forms my hands cramp up (could be a combination of carpal tunnel syndrome & MS) cause my arms/hands get numb & tingly). I always wake up with numb, tingly & painful hands/arms and can’t make a fist or do much with them initially. So as for the vision stuff, like I said, I wrote off some of it do to the fact that I worked in the computer field and was behind a computer for 8 hours a day so it was no wonder I was getting the glare. I’d be driving home and my eyes were still adjusting. As for now, I am seeing an eye doctor and I go back for a field test in February so we’ll see how that goes. I do still drive, but because of sheer MS exhaustion mainly, I tend to only drive local and not too often.

  • Kileigh
    11 months ago

    Thank you for this article! I still drive when I need to (luckily since I’m under 40 with a child and traveling husband). But, a couple hours driving in the car will send me to bed with oscillopia. It was the symptom that got me diagnosed and the most terrifying thing I’ve experienced to date. It’s impossible to explain to someone who hasn’t experienced it. I’ve found that friends have had vertigo can understand best- they’re always horrified when I tell them it was intractable for 4 months.

  • Matt Allen G author
    10 months ago

    vertigo is the closest relatable thing I can think of when trying to describe it. “It’s like things are moving but they aren’t but they kind of are” doesn’t make much sense

  • lcal
    11 months ago

    Hi Matt thank you for your post. When I was diagnosed 20+ years ago I had lost over a series of days all the vision in my right eye it was totally black. And because she I have hemiplegic migraines and previously had a stroke I was told at first that’s what it was. I did not listen and went to hospital where u was sent home several times in a series if days and told I was Gavin mass hysteria but all this is another story. Fast forward after 100% vision loss in my rt eye I regained it in 3 months but have have numerous neuritis cases since in the same age as well as twice in the left eye. needless to say I don’t drive much anymore and the reason I am commenting on your article is I’ve ofter thought thought it’s mostly cognative issues with cats coming in opposite direction until I just read your story. So yes I understand the fine line of cognition/vision but never thought I’d the correlation until now. Not that anything will change because if I’m not comfortable driving even the oil amount I do drive I NEVER DO. ITS NOT WORTH IT and I want others to head that warning It dies suck as I live in middle if the woods but not worth anyone’s life. So thank you for sharing Matt
    Lisa

  • lcal
    11 months ago

    Omgosh. Fir anyone who may have just read my post IM SORRY FOR THE BAD TYPING AND I DONT KNOW HIW TO EDIT IT SO I HOPE YOU ALL CAN USE YOUR IMMAGIBATIONS AND PUT IIN WORDS THAT MAKE SENSE
    RE not cats. But CARS
    SORRY
    LISA CAL

  • Matt Allen G author
    10 months ago

    I figured you meant CARS not CATS, otherwise, I would say you have another more pressing issue haha

  • potter
    11 months ago

    I am pretty lucky with my eyes, I have a small whole in my vision in one eye. Troubled with light flashes even when my eyes are closed and trying to sleep. I did have one summer where it looked like I was looking through a whitish fog. This would happen after I spent a half an hour reading, working in my studio or on the computer. I was sent to a specialist but no one could figure out what was going on. It lasted about 3 months. I still drive but not much, my husband is retiring in a year so he will be my driver. Potter

  • bruscor
    11 months ago

    Thank you for this article as it has opened my eyes (pun intended) as to how much MS symptoms vary from person to person. I had optic neuritis about 20 years ago. I lost central vision in my left eye. If I stared or looked at something directly, a white spot would cover up that person or thing. I was in college at the time and initially thought the problem was caused by my habit of sleeping in my contacts (a big no no!). The optometrist I visited in Athens, GA (home of my college town – Go Georgia Bulldawgs! – pardon my distraction) told me optic neuritis could be the first symptom that I had MS. He sent me for a catscan which failed to show any lesions in my brain (as I should’ve been sent for a MRI). Took another 12 years and another, different relapse to be diagnosed. Happy to have had 12 years living in ignorant bliss about my health condition (became a trial attorney and then judge) but sad to have not received any disease modifying drugs in the meantime — let alone focusing upon exercise and lowering stress in my life.

  • cindyrn68
    11 months ago

    Wow! I have never read an article that does such a good job of explaining my visual symptoms. It was the visual symptoms that got me admitted to the hospital and led to my diagnosis. The persistant blurriness is really difficulty to deal with. I’m a nurse and I’m worried about my vision putting me out of my profession one day. I’m keeping this article as a teaching tool.

  • CarrieT
    11 months ago

    Thank you for this article, makes me feel less alienated. Optic neuritis began in my right eye on Christmas of 16, and never fully recovered. October 22 of 17 I got out in my left eye. I am color blind and everything looks as though I stated at the sun too long. I live in a rural area so I don’t get out much. In perfect conditions, I can drive to the store a couple miles away taking back roads, it’s extremely scary. I am a nurse but cannot perform my job this way, even if I could drive. I keep reading articles like this (not easily, it’s taking forever for me to type this as well), and I feel a little less alone.

  • Carter22
    11 months ago

    I just quit driving this past December. I have a blind spot in my left eye. My optometrist tried to correct it with prisms, but it doesn’t work. I had a really bad wreck about 3 years ago. I was a year at recovering from it. Thinking the prisms were working, I kept driving. I had a minor accident in November but it was caused b y the blind spot in my vision. I miss being able to run to the store when I need something or go out to lunch, but UBER or LYFT gets me to most places I need to go. Better safe than sorry.

  • Matt Allen G author
    11 months ago

    Yeah I miss that independence too, SO MUCH! But man, Uber/Lyft is so expensive!

  • Mascha
    11 months ago

    Thank you for this great article. My first official flare was optis neurotis,and i lost some of ny vision. 60% i have left. I still drive. I wanted to stop but before i did my husband suggested i get my eyes tested again. I went to the same eye doctor and it was the same as in 2012,so decided i drive:)
    Great article

  • Matt Allen G author
    11 months ago

    It really depends on whether or not you feel safe to drive, you know your abilities best!

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