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The Fear of Vision Symptoms

Multiple sclerosis can create a lot of frightening moments. From unexpected falls to sudden jolts of pain, this disease has plenty of options when it comes to striking our hearts with fear.

When MS affects one of our primary senses

Some of the scariest symptoms have to do with one of our primary senses: our ability to see. Vision issues are actually very prevalent among those with MS; 80% of those with MS will at some point experience them.1 Very often, vision problems are the very first symptom that people notice, often being the driving factor that sends them in search of a diagnosis. No matter how early or often we’re forced to confront these attacks on our sight, vision issues remain a scary symptom for those with MS.

How MS causes vision symptoms

OK, by now you hopefully have a good idea of how MS works. Our immune system gets overactive and attacks the lining (myelin) around our nerves. This attack damages or destroys that lining, making that nerve less efficient at conducting electrical signals from the brain. The brain says to do something, and because of that damage to the myelin, the signal doesn’t arrive in time, or at all, or only partially arrives. We start to have problems with our vision when this damage is done to the nerves that control our vision.

When our vision is affected, we can experience several types of issues:

Optic neuritis

When the optic nerve becomes inflamed, this can manifest in several ways. This includes blurred or dim vision, color vision loss, pain when moving the eyes, side vision loss, and even full vision loss. Typically, this only happens in one eye at a time, and vision will return to normal, but there are cases of it being permanent.

Nystagmus

Involuntary movement of the eyes. Often called “dancing eyes” because your eyes may rapidly move side to side or up and down. Not only does this affect our ability to see, but it can be very disorienting as well.

Diplopia

Double vision brought when the nerves that control our eye movement have been affected by MS. The muscles that control our eye movements are coordinated. When the nerves of one of those groups of muscles are affected by MS and the other nerves are not, it often manifests itself as this type of double vision.

Living with MS vision symptoms

As I mentioned before, anything that causes vision problems is extremely frightening. Even if you know that your vision will return to normal, there is always that slight fear that it won’t. It can also affect nearly every aspect of your life. Vision issues were not among my early problems (as they normally are for those with MS). They came later in the form of extremely blurred vision and also impaired side vision.

MS triggers can bring vision symptoms to the surface

While time and a course of IV steroids did improve that particular exacerbation, like so many MS symptoms, the damage to the nerves is done. If I get too warm, overworked, or stressed, the issues come to the surface again.

What if my vision doesn’t return?

My vision issues are actually one of the ways I first begin to realize that I need to rest or cool off. The warmer I get, the blurrier my vision becomes and eventually, the sides of my vision becomes dark to the point that I have little to no real peripheral vision. No matter how used to it I am, it can still cause me to worry. I know my vision normally returns, but what if it doesn’t? What if this isn’t old damage but the part of a new exacerbation that takes my sight forever?

Vision issues can mess with your head

There is just something about losing one of your primary senses that can really mess with your head. Like so many things with this disease, it’s a mind game. You need to reassure yourself that you’ll be OK and that, statistically, you’ll be fine, that your vision will return. Patience is the name of the game. That said, if you suspect that your vision issues are new or extremely worsened, get in touch with your neurologist. A course of steroids can be helpful in minimizing the overall time that you are suffering.

Thanks so much for reading and always feel free to share!

Devin

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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.

  1. Vision Problems. National MS Society. Accessed February 7, 2020. https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Vision-Problems.

Comments

  • ghostinside
    2 weeks ago

    Thanks for writing this, Devin. Most of what you write resonates with me and each article has a nugget that really hits home. Sometimes I get a pain in my affected eye when I move it and like you, I fear that another bout of optic neuritis might be starting. So far it has always been a false alarm but I’m hyper aware of what is happening with my vision now. For me, the hardest part of having MS is the uncertainty and unpredictability of it all.

  • Devin Garlit moderator author
    2 weeks ago

    Thank so much @ghostinside, I really appreciate you taking the time to say that.

  • Bkboo
    2 weeks ago

    have been so frustrated with my vision. My optometrist says your eye is good, healthy, etc….and I would say then why cant I see well? no answer…..after 2 yrs I went to another Opt…he stated I was almost legally blind in my left eye. I got new glasses and it has helped a lot.

    My first MS attack (1990s) had double vision. I had great vision never wore glasses. BUT
    My vision declined Fast and dramatically especially my left eye. It doesn’t feel like age either…

  • Devin Garlit moderator author
    2 weeks ago

    Thank you for sharing @Bkboo, that’s one thing about MS, while we may experience trouble with our eyes or legs or other body parts, those parts can be perfectly fine when examined. The real issue is the wiring between those parts and our brain.

  • rhogb
    2 weeks ago

    When my MS started about 25 years ago , I started having really bad headaches the doctors put me in hospital thinking that I had a brain tumour . I would walk around the ward thinking what a fraud I was , looking at the poor souls that were in that ward.
    Well after god knows how many tests the doctors said no it is not a brain tumour we think you may have MS but we cant be certain untill you have more attacks. If I was female and the age that I was they said that it would nearly be certain that I had MS.
    Life goes on and I had more attacks and it turns out that yes I have MS.
    One of the symptoms was optical neuritice and I eventually lost the sight in my right eye. My main concern was can I still drive ? Docter says that there are plenty of one eyed drivers out there.
    Well my sight eventually came back but not as good as it was and every time I get an attack of optical neuritice it is not as good as before. Luckily I still have my left eye as well.

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much for sharing @rhogb, I took spent some time in a hospital over 20 years ago when they just didn’t know enough. Thankfully, they’re much better at making the right diagnosis these, but stories like ours are still to common.

  • Lisasnyc
    2 weeks ago

    Devin, great article. Thank you so much.Remembering when I had optic neuritis- like many-my very first symptom. I was so scared!! Had what I thought was a reoccurrence. Luckily I needed glasses, but the fear was still there. When I was first diagnosed, optic neuritis was’t considered permanent, but unfortunately that has changed. Remember, for any new symptom or a reoccurring one, call your neurologist or care team ASAP!!! Live well, Lisa

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much @Lisasnyc!

  • AnthonyStark86
    2 weeks ago

    I’ve been struggling with bad peripheral vision now for five or six years. Nothing scares me more than problems with my vision. It’s comforting to hear other people’s experiences. Great article.

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @AnthonyStark86, i feel like anything involving vision can be absolutely terrifying!

  • rnhviolin
    2 weeks ago

    that was such a clear and succinct paper, thank you, roz

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @rnhviolin! Very much appreciated!

  • LindaColorado
    2 weeks ago

    Devin, your article really hit home with me. I finally interacted with a neurologist when I started to get kaleidoscope vision when I turned my head. That progressed to what the neurologist called double vision, but in fact was so much worse than double vision. I could see three levels of vision in my right eye and four levels of vision in my left eye. As you mentioned, putting me in the hospital for a week on the steroid drip should have helped…only I had an allergic reaction to the steroids. That brought on total blindness and took about a year to get the eyesight back. When my eyesight returned, I needed a notecard to read a book and a sheet of paper to track across a computer screen. I had also lost the ability to speed read. The good news is that I didn’t seem to have additional problems with eyesight for about a dozen years…other than the residual limitations created by the relapse involving losing my sight earlier. You are so perceptive to acknowledge the fear it created in the back of my mind about losing sight in the future. Then I started losing peripheral vision slowly once I crossed into SPMS. I was down to about 1 vertical inch of vision which made me close one eye to see as the eyes are separated by more than an inch. In addition, if I even turned my head slightly, I went into kaleidoscope vision, blinding me. Needless to say, I had given up driving along the way, and it forced me to retire after 23 years as a stockbroker. But, after nine years in SPMS, I got help when I joined an MS study with Dr. Raymond Damadian and Dr. Scott Rosa. They feel MS is related to head or neck trauma, leading to the blockage in CSF (cerebral spinal fluid) flow in the cervical spine. This blockage in CSF flow leads to the back-up of CSF in the ventricles in the brain, and that leads to the leakage of CSF from the ventricles. This is more than a theorry as Dr. Damadian has imaged the blockage, the leakage of CSF from the ventricles, measured flow rates in CSF flow, and calculated the intracranial pressure created by this blockage, all non invasively. Long story short, after being scanned by Dr. Damadian in the Upright Multi-position MRI, I was a classic case of what Dr. Damadian expected to find based on my symptoms. I had 4 blockage points in my CSF flow, my atlas disc was diagonal, my C2 was rotated, and I was leaking CSF from all 4 ventricles in my brain. That is when Dr. Rosa came into play. He studied my scans and performed atlas alignment with the atlas orthogonal instrument along with IGAT, his own patented software, and perfectly aligned my cervical spine non invasively. My peripheral vision came back immediately. I was encouraged to not turn my head for 2 weeks by Dr. Rosa in order to hold the correct alignment. I was so pleased to get my eyesight back that I made sure not to turn my head for 3 weeks, just to be safe. When I turned my head, the kaleidoscope vision was gone. I could drive again, and read books. AND my speed reading came back! I have posted about the help I received from these Doctors before on this site so I won’t go into the additional improvements I experienced, but it is going on 8 years now since I was treated and none of my regained abilities have regressed.

  • wolfmom21fl
    2 weeks ago

    Ty, Devin, for another timely article here. I, too, have had an atypical vision history with MS..altho i have always been near sighted and needed glasses, it wasnt until recently that i have had any major real issues with my vision. In the early part of 2018 i was dx’d with cataracts AND optic neuritis and at the same time they told me my visual field was shrinking.. my outer peripheral vision was about 20% gone. it was scary. My eye doc attempted to reassure me with “a small percentage of cataract patients regain some peripheral vision after cataract surgery”.. not this patient however. UGH.. anyway, this past year in November i went back for check up, and some pain in left eye again.. yeah, you guessed it.. optic neuritis and now my visual field is MUCH worse! went from that 20% loss to about 40% in 18 months time.. i am terrified. My neuro sent me for ultrasound of my carotid arteries in my neck just to be sure there was no blockages causing this issue by a reduced blood flow or anything weird like that.. all normal. so yeah i am scared to death. i dont know what i would do if i lose my vision completely. I already have lost my driving privileges due to my vision issues and my little partial complex seizures.. but there is so much more at stake than that.. TY again for this article and please keep writing! I appreciate you for sure! LOL

  • Devin Garlit moderator author
    2 weeks ago

    Thank you for sharing that @wolfmom21fl, very much appreciated! I’m pulling for you and hope all turns out well!

  • wolfmom21fl
    2 weeks ago

    TY.. you too!!!

  • michclaud
    2 weeks ago

    I have stated before how my eye doctor was the only one I saw fir 37 yrs, sent me for my first MRI, and prompted all my doctor visits until I was diagnosed with PPMS. I just had another issue with my ‘good’ eye with a pain that felt like a needle in my eye and cloudy vision that started clearing up after 3 days! Scared me!

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @michclaud, you’d be surprised how many people have stories similar to yours, where it’s their eye doctor that is the driving force for them to seek an MS diagnosis.

  • NikkiWikki
    2 weeks ago

    I went outside where I work to get the sun on my face and felt like someone had stabbed me in the eye. After that, my vision looked like it had a brownish red filter over it. It was very irritating. I am a stained-glass artist and require good color vision. I didn’t know that I had MS. I went to the eye doctor thinking it was an eye problem and he told me that my eyes were physiologically perfect. He was afraid that it was neurological. I took a neurological field test and he said that it was and he looked very concerned. I came back two weeks later and took the field test again and he seemed relieved and told me that he wasn’t what he was afraid that it might be. It was so frustrating all the time. I was diagnosed with MS and told that it was a problem with my optic nerve that I was still experiencing with my eyes. I read an article about how an over-the-counter anti-histamine from Walgreens called Wal-hist was curing peoples optic nerve problems. They were not sure why but the dose was approximately twice the dose that is recommended on the box it used as an anti-histamine. I started buying and taking Wal-hist and within a month, the problem with my vision went away and it has never come back. That was four years ago.

  • Janus Galante moderator
    2 weeks ago

    Hi Devin,
    I just want to say that when I first saw this gal and the way her eyes were moving, it was like looking in a mirror,
    and yes, it was one of the first symptoms that did push me to FINALLY going to my gp, who in turn referred me to my neurologist who in turn after diagnosed me. (The simplified version).
    My eyes don’t do that so much anymore, except as you mentioned, the triggers definitely for me, are overdoing it and getting too warm.
    Thanks for the very interesting article! Janus

  • Devin Garlit moderator author
    2 weeks ago

    Thank you Janus! Vision issues are such a common problem for people, especially initially. Many people have a story extremely similar to yours!

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