Seeing the World Through Different Eyes

Everything was just a tad off focus– like I couldn’t get my eyes to look forward no matter how hard I tried. I asked my mom for advice, not thinking anything of it. She figured it was allergies, gave me an Allegra and sent me on my way after I convinced her I didn’t need to see a doctor; I felt better after that. My eyes returned to normal, life went on. I left for college two days later.

Turns out, I wasn’t fine and things did not go back to normal. About a week into my sophomore year, I woke up one morning and had no control over my left arm. I found this out when I went to put my contact lenses in the morning of my first day of work, at my first real job, and my hand shot right past my face. I thought it was weird, but assumed I was just tired or having a “me moment.” So, off to work I went.

That was the beginning of my downward spiral with MS–I thought loss of mobility and strength was my first symptom; it wasn’t. It was the moment my eyes wacked out on me.

To this day, the most irritating symptom I continuously experience is the loss of visual focus. I’ll go to read and I just can’t. I try to do a task and I can’t because I can’t see well enough. It feels as though my eyes are going cross and there’s nothing I can do to help it.

This is one of those symptoms I feel is rarely talked about. It may not be as alarming as losing the ability to use my dominant hand or walk normally, but it’s incredibly frustrating and does absolutely impact quality of life.

I always made the joke that I was like a bat because my vision in general is just poor; introduce MS and the whole world turned upside down (almost literally). More often than not, I see the world through wavering, blurred vision. It’s almost like constant proof that MS exists and it is indeed inside of me. I am fortunate enough to preserve my quality of life due to a nutritionally dense diet and frequent exercise, but it is within the moments of weakness that my condition comes to fruition. I am reminded of my MS in the moments where I cannot see; the moments where I truly feel vulnerable. I work hard to maintain my quality of life and the moments where my symptoms take over do not only act as a reminder of what I’ve been through, but humble me to realize what I’ve managed to overcome.

It’s okay to be down for the count sometimes–we can’t all be “on” at all times. Just know, at the end of the day, you are not fighting this battle alone.
 

If you would like more information on vision and MS, visit the National MS Society's website.  
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Catherine

Catherine Weston

Catherine is a professional in the medical marketing industry from Long Island, NY. She aspires to show the world that MS doesn't hold her back. She was diagnosed in 2014 and has been striving to help others overcome their fears and limitations since (she also loves sheep!). Keep up with Catherine and her adventures in wellness through her blog!

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    26 Comments

  • theresa samartan   Feb 21, 2019 8:49 AM
    Have you found/connected with anyone else who experiences the vision symptoms? How long does it last? Wondering if there's any info/advice out there on meditation or ideas on how to help. Appreciated the insight into this unique symptom--thanks for sharing!
  • Karen   Feb 21, 2019 11:16 AM
    Thank you! I was diagnosed in 2008 after a bout with optic neuritis...in the last couple years, I thought my vision had gotten worse -- but that wasn't confirmed by eye exam (my vision is abysmal anyway. :) ) Since I work as a writer, I spend a lot of time at the computer and it was attributed to fatigue. But, it sounds an awful lot like what you experience, and now I feel just a little less crazy. :D
  • Jill   Feb 21, 2019 11:24 AM
    One of my first signs of MS was going cross eyed for 1 year (1980-1981). This happened less then a month after I was married. I have dealt with Optic Neuritis since then. Now I am dealing with the blurry and double vision symptoms. Best way to deal with these issues is to have a good neurologist and a good eye doctor. They have many ideas and can help you work through these issues. Remember that it could always be worse and at least you are here to talk about it. Good Luck!!
  • Judy Donaldson   Feb 21, 2019 11:43 AM
    Great to find out vision can be part of MS and it helped to read that there are times when being tired can worsen symptoms. THank you for being so upbeat
  • Sandra Gray   Feb 21, 2019 12:03 PM
    At nearly 80yrs old, and living with MS since 1986, it's been a balancing act.
    I too have "wonky eyes" frequently. I also
    deal with Lupus, solitary kidney, macular
    degeneration, myasthenia gravis. Eyes
    problems plague my life but I lead a
    busy productive life. Stay positive and
    keep up with your physicians advice.
    God bless us all !
  • Bridgette   Feb 21, 2019 12:14 PM
    Thank you so very much for sharing this. I am so sorry about your vision struggles, and I admire you so much for your perseverance. I was diagnosed with MS in 2008 and began having vision issues three years ago as a result of my MS. Like you, I have had terrible vision my entire life, but now I see everything double/triple and everything is quite blurry all of the time. I have lost the majority of my field of vision over the past two years. I see a neuro opthamologist at least twice a year, have had every kind of specialized vision test in existence and the conclusion is that there is nothing that can be done. And as with anyone who has MS, the future is unpredictable. As you said, there does not seem to be as much discussion or articles written about vision loss associated with MS as there are about other symptoms/side effects. Keep strong and know you are not alone.
  • Linda baxter   Feb 21, 2019 2:25 PM
    Thank you for putting my visual frustration to words. It's always comforting to hear from someone who truly understands MS. I've been on this roller coaster ride of MS since 1983.
  • sue   Feb 21, 2019 2:48 PM
    I have ocular migraines. while I have seen many docs, most just pass it off as stress or processed foods. funny... I get them in my sleep and they wake me up. I have seen neurologists, optic neurologists and they now are sending me to a migraine specialist. the latest med prescribed causes drowsiness, dizziness, loss of concentration and word use, but it does cure insomnia.... (that's the joke part, most days I want to take a nap). God bless you and keep you safe on your journey with MS.
  • Ann   Feb 21, 2019 2:49 PM
    My eyes also have been my most aggravating ms symptom. In the past year I have episodes of pain behind my eyes making it difficult to open my lids during the pain. The length of pain varies. I do have optic nerve damage, prisms for double vision and amber lens for the glare of bright lights. My neurologist does not believe the eye pain is from the ms because I do not have migraines. Any ideas?
  • Ursula Thompson   Feb 21, 2019 3:29 PM
    I was diagnosed with MS last year when I woke up with double vision. The Optometrist told me I needed to go to the hospital. Instead I went home only to find my vision getting worse the walls were litterly caving in on me and on the way to the hospital it was so bad that it seemed like we were driving on the grass and the lines were all over the place. After 5 days they diagnosed me.So yes vision is definitely a symptom!
  • Christine E Vaile   Feb 21, 2019 3:35 PM
    Nice to see so many people experiencing the same thing! I find the vision problems to be very disturbing while driving! Focus! I tell myself, your funny myself says back. And round and round we go! I also find trying to get glasses pretty hard to, depending on what kind of day I’m having, the prescription could be right orrrrrrr maybe not. So nice to meet you! And chin up
  • Connie Harold   Feb 21, 2019 3:57 PM
    You are right about vision problems not being talked about or even well understood. I have had periods when my eyes wouldn't focus since I was a small child, often ccompanied by a greying of colors. But most dramatically were moments of absolute blindness and thr additional distress that came with it because no one believed me. If they had I'm sure I would have been diagnosed with MS years before I became disabled by it and could have made better plans. As difficult as the lack of focus may be for you I'm glad to know you are still able to work. I was a professional graphic designer and illustrator. Not anymore. I hope more research is done on vision loss and MS. In the meantime my dreams are in Technicolor.
  • Donna Pollizatto   Feb 21, 2019 5:00 PM
    I too have vision issues that are driving me crazy! I was just diagnosed and on Tysabri, just had my 3rd infusion. I'm going to see neuro-opthamologist to find out if there is anything I can do to help with this issue. Are you currently on any treatment? I'm hoping to connect with people to better cope with this disease.
  • Judy Frank   Feb 21, 2019 7:19 PM
    Thanks for sharing your story. Before I was diagnosed with MS in Sept 1993, I had trouble with my eyes. My new contact prescription was changed three times before they sent me in for a brain CT to rule out a tumor. At work, the bright lights seemed darker and everywhere colors seemed a little off. I had a 'cloud' covering my eyes because things seemed like there was a glow around them especially lights. I developed double vision and nausea. When the neurologist examined me in the ER, she noticed my eyes jumping, called nystagmus, and followed up with a MRI & spinal puncture to confirm my MS diagnosis. My ophthalmologist specializes in neurological issues and now has me in prism glasses to help me see clearly again.
  • Julie   Feb 22, 2019 2:55 AM
    I’m not sure if I’m happy or sad to hear others r having issues too. I was diagnosed in Nov2001. My life changed but I was able to work and had great night life. As a child i wore contacts so when my parents had my eyes fix I had 20/20...😀 it was great for 15 yrs. during a change in medication and a terrible gas leak I started having problems with my eyes, i told my doctor but he just blew it off thought i was over reacting. I was having opic neuritis, thankfully he’s no longer my doc, i was having problems in one eye slightly and the other went from 20/20 to i don’t know but it changed greatly and It was never thr same. Now my eyed r constantly changing. Depending if I’m tired, Im hungry, I’m getting a migraine this could b all on the same day. My computer screen at work gave me migraines so i left that job. Was forced to go live with my parents at 40. The gas leak was playing a terrible roller coaster in my life. It nice to hear others r having issues too. My life is better now, I’m on SSD now, out of my parents house and living on my own again. I heard they r make contacts that u can see near n far... i just heard about it a few months ago and need to go to the eye doc. Who knows if it will work but I have hope again. 🙏🏻
    Keep your self surrounded by positive people, we all have this terrible disease, they r coming out with new meds all the time and maybe they will find a cure. But until then.... peace😀
  • Stephanie Blevins   Feb 22, 2019 9:24 AM
    Thank you for this blog and article, it is my main issue with my MS. Sounds exactly like me.
  • Diane Price   Feb 22, 2019 10:35 AM
    I was diagnosed with MS in 1990. One of my first symptoms was Optic Neuritis. I was blind in both eyes for about 7 months. My eye sight is one of my biggest problems. I have continued problems with blurred vision, floaters the size of Mr. Salty peanuts, double vision, and eyelid droop causing vision loss. I have been managing an Independent Living Retirement Home for over 20 years. Having a place to go to every day has helped me not to think of my MS or doing a hourly inventory of how I am feeling. It is good to know that others walk in my shoes. Keep positive and keep going as know one is going to do it for you. God Bless
  • Peggy Torres   Feb 22, 2019 3:28 PM
    I understand this completely although I only have one (1) eye. When my eye decides it doesn't want to work correctly, then I am basically left at the mercy of this fickle optic neuritis. Luckily it can usually be treated with some steroids but that's not for most people. You can see by my email address that I'm a 1 eyed girl and being partially or completely blind for days or even a week, can be terrifying.
  • Peggy Torres   Feb 22, 2019 3:29 PM
    I understand this completely although I only have one (1) eye. When my eye decides it doesn't want to work correctly, then I am basically left at the mercy of this fickle optic neuritis. Luckily it can usually be treated with some steroids but that's not for most people. You can see by my email address that I'm a 1 eyed girl and being partially or completely blind for days or even a week, can be terrifying.
  • Avatar
    pricklybee  Feb 23, 2019 12:26 PM
    Thanks for that blog about vision. I have vision problems every day, but they seem so minimal compared to what "could" be happening, I just keep quiet about it and forge ahead. As for the sheep love, learn how to spin! After you catch on, it's relaxing and fun, and it smells great!
  • Doug Monas   Feb 24, 2019 6:51 PM
    I don’t know if it’s my most troublesome issue but after going to ophthalmologist, neuro-ophthalmologists and orthotists ive become resigned to the fact that I’ll never get my vision properly corrected. I can’t tell you how many prescriptions I’ve had filled only to find myself squinting when scrolling through my DVR. This is beyond frustrating!
  • Diane   Feb 27, 2019 10:27 AM
    I too struggle with focus and can't explain it other than by saying my eyes feel weak.
    Also diagnosed in 2014, it was my eyes not tracking together causing my vision to be distorted. I too am determined to live life as if MS is not holding me back.
    Some days are better than others (thankfully more GOOD ones).
    Reading your description of the vision issues you experience make me feel I am not alone. My eye exams are always good but my vision is definitely not what is was prediagnosis.
  • Toni Stromnes   Apr 4, 2019 11:32 AM
    I have been tested for epilepsy becuz of this... thank you for sharing. No one knew what the heck it was, not even the doctors!
  • Tammy   Apr 4, 2019 1:10 PM
    Thank you for sharing your story, I don’t feel so alone.
  • Gary   Apr 4, 2019 2:02 PM
    I have the same problem, went to the eye doctor and she said I needed bifocals. I wasn't an eye glass user and she said I needed them, it only made things worse. The bifocals didn't have the line across the lens but went up and down making things alot worse. I took them back and got a refund. Now I live a blurry life with no eye glasses.
  • Kennisha   Apr 4, 2019 11:47 PM
    I’m starting to have problems with my left eye. When I wake up in the morning my eye hurts so bad when the light hit it. I was diagnosed in Aug. 2018 with ms. I have other problems with leg pain and weakness in my right hand. Open for suggestions please help. Thank you