Multiple Sclerosis and Vision Loss

OK so today I want to talk a bit about vision loss with Multiple Sclerosis, at least MY MS. Not sure if it is like this for everyone else because I can not look at the world through their eyes. So the following pictures are kind of how I see things. They are not spot on but after checking them out you should get the basic idea…

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First let’s take a look at my blurred vision. This is almost a constant, especially since my first hospital stay… It has not got any better… Usually it clears up quite a bit after a steroid treatment but not this time… I got used to it after a while but now it is way worse!

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Glasses help a bit but as you can see things are still a little blurry even with them on. For most people this issue is caused by inflammation along the optic nerves, this is called optic neuritis and is one of the most common symptoms among MS Patients. For me, at least the last time I had an eye exam, there is nothing wrong with my optic nerves but instead there is a lesion on my brain where the signals from the optic nerves are sent. That could have changed though, need to get back in to find out!

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What has never, ever, gone away for me is a blind spot in the left of my peripheral vision. Things just kind of fade away when they enter  this spot… They disappear… Makes driving a little scary sometimes! When I COULD drive (since I can’t right now) I had to make sure I constantly scanned with my eyes so that I would never loose track of a car in my blind spot. It was a new way of looking at the world, literally! One again I adapted, changed, and it became second nature. In the above image you can see where my blind spot would be if I was looking at that center tack. Below you can get a taste of what driving against traffic is like if I do not scan.

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Lastly I occasionally get double vision which I hate more than anything. Nothing helps! Sometimes covering one eyes helps (because the double vision can be caused by both eyes not focusing right on the same target) but sometimes the issue is in the brain… Double vision makes my dizziness worse and and sometimes makes me a little nauseated… Never thought I would have to wear an eye patch but I have! You can’t wear it too long but I can not remember why at the moment. You can also get a prism put over one eye on you glasses if the issue is not going away…

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Keep in mind, this is just my own experience with vision loss. It will be different with each person!

23 thoughts on “Multiple Sclerosis and Vision Loss

  • June 1, 2012 at 7:41 am
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    Hi Matt,

    I went to my Neuro today and talked about a lot of stuff and he gives me about an hour, which is great. Although, I have to wait an hour past my appt. time, that is okay, because if he is just taking real time with each person, then GOOD on him.

    I've read your last couple of posts and I am going to contemplate on them. You are in your early 20's, I am in my early 60's….we each have MS, with our own perspective and experience. But…..we also have our own perspective and experience, just being a human being in this life of ours.

    It is so fascinating to me and so interesting and so important for people like us, with 40 years difference in age, to share our MS STORY and our live story because I know deeply, that all of us are ONE. Talking……to one another is really special and I'm thankful for that.

    So, I will send you a message, when I can compile, what I hope will reach you and others.

    Thanks Matt….I never did what you are doing….so GOOD on you!

    We are all in this life together, for whatever reason….I do believe there is one.

    Mary-Ellen

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  • June 1, 2012 at 9:39 pm
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    Well Mary-Ellen, blogging was not an option till recently so don't feel bad, I was born into this technology! I'm just glad people read and feel helped!!

    I will check out those links, I have been tweaking my diet since the start of 2012!

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  • June 3, 2012 at 10:40 pm
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    most of that looks normal to me 🙁 no glasses but double vision

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  • June 6, 2012 at 8:29 pm
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    Dude,

    Just stumbled upon your blog after catching a hit from my Copaxone injection search. I was diagnosed in 2002 after I woke up and my legs were numb from the waist down. Full mobility, I just couldn't feel anything. Was put on Avonex and this years scan finally revealed the insidious creepy plaques on the brain. Fearing some Alzheimer type effects, my neuro put me on Copaxone. I start tomorrow. Anyway, just wanted to say you are not alone and keep up the work with the blog. I am sure it is therapeutic and certainly will help others. Cheers.

    BW

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  • June 7, 2012 at 5:00 am
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    Hey Matt, I totally understand what you mean. I have optic neuritis and have some permanent damage. Even with my glasses I can't see very good and YES I get double vision. Since I do have permanent damage however my vision gets WORSE and it happens when I'm reading. Doc told me that my body is saying to rest my eyes, so when it gets temporary worse, I have to wait awhile then it will go back ot the NORMAL eye blurry vision. I hear your frustration my friend. Is there anything that will make it worse? Heat, Reading etc.?

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  • June 8, 2012 at 7:16 pm
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    Thanks BW!

    Anything that make it worse? Well… For me Heat and stress are my main triggers. Right now, this year, there seems to be no consistency though….

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  • June 24, 2012 at 9:20 pm
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    Hi Matt,
    My name is Doreen and Ihave M.S. to. I was diagnosed in 2002 and was put on Avonex right away. I had Vertigo and then relapsed into Optic Neuritis in Dec '02. That lasted 11 months, but my vision came back 100%, so yours can to. The lesion on my brain healed, so the sight restored. Now I've just started Copaxone a month ago after another exacerbation that hit my left side, arm, leg, torso relapsed Apr '11 . I'm getting better, slowly. I can walk now without a cane or a walker for the first time in 15 months. So, I know we are all different, but sometimes this horrible disease remits and you can be what you were? I also take Vitamin D, 8000 mil per day because my level was almost non existant. You've stated change of life style and that's the only way to do it! You'll be ok, so hang in there. As someone who thought I was done for as far as walking was concerned, I actually RAN for the first time this morning! So, just try to keep positive and thanks for your YT videos. Feel better and all the best. P.S. I'm 43 and healing and you can to.

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  • June 30, 2012 at 6:15 pm
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    I envy you on the running and everything. Man… Fingers crossed for both of us :^b

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  • December 10, 2012 at 8:01 pm
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    Hi everyone
    I was just wondering if anyone has been told that their eye pressure is high ? In the last year my eye pressure has been higher than what is normal , yet my field vision is perfect so I do not have glaucoma . I have a scar behind my eye but not on my optic nerve . I suffer headaches and face pain and have restless toes / feet , can't stop help but keep wiggling them . Doctor has never heard of it !
    I am having a CT scan next week and wanted to know whether a CT scan would show MS scarring ?

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  • December 11, 2012 at 3:35 am
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    No, you need an MRI… RLS sucks! Clonazepam helped me. Never had high eye pressure,

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  • May 31, 2013 at 7:40 pm
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    Matt,

    I've been in diagnosis hell since March of 2011: neuro symptoms first (weakness, tingling, fatigue, cognitive issues), and have had 2 big relapses every spring since then. This one brought on what is suspected to be ON (disc pallor, small T2 enhancement on the nerve, significant visual field loss), but since my contrast started to come back, everyone is hesitant to treat with Solu-Medrol without 100% certainty.

    Anyway, what I'm getting at is this…thank you so much for this blog entry. Explaining my ophthalmic symptoms is sometimes hard to do. "Blurring" really doesn't drive the point home, and after reading this, I think I actually have a touch of double vision. I've been blind in 1 eye since birth and didn't think this was possible…but that picture is exactly definitive! Brilliant. I may print some of your photos out to give my docs a better idea. Thanks again!

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  • June 13, 2013 at 5:02 pm
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    Hey, that's all I am trying to do! Help explain just how it is! I guess I am decent with words and trying to tell people how something is even with the aid of pictures, so go for it and good luck!

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  • June 26, 2013 at 5:06 am
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    Found out that I had MS four years ago. Haven't been to the eye doctor in five years, because I had Lasik eye surgery done. Went today because of bad pain in left eye and blurr vision. The eye doctor thinks I have Optic Neuritis. He wants me to follow up with my Neuro. Now that I think about it, my vision has been getting blurry on and off for awhile. Kind of scared!! Matt, how have you handled the change in your eye sight?

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  • June 26, 2013 at 3:12 pm
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    Yes, what sucks. is you EYE could be perfectly fine but your optic nerve is damaged or your brain where the signals from your eye are interpreted…

    I wish I had a good answer but honestly? I just got used to it… It happens so slowly that you dont notice it much till one day you go "wow, I can't read that". I am noticing I need my glasses way more lately. The blind spot just requires working around it, and stuff like double vision just require patients while waiting for it to go away…

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  • January 30, 2015 at 6:02 pm
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    Hi there!

    Any improvements? Did your vision get better Matt? I am experiencing the same thing. Just that, the blind spots are more in number in one eye. And the other, well it is just blurry. Learnt how to cope with this?

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    • January 31, 2015 at 5:01 pm
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      It always changes. Sometimes it gets better and sometimes worse. As we speak (or I type this) I can't see straight but that's because of vertigo.

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  • December 27, 2015 at 8:58 pm
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    Hey Matt, my name is Matt too well wierd but I have ms too. I found your post for looking for a solution I have blurry vision and my double vision is almost always active. I try to focus all my energy to bring my eyes together so other people can't see it. But then I can't see, haha~ funny kinda. But with double vision my eyes separately do provide a clear image. I donno why. And if I take Ritalin I feel better got one from a friend a long time ago. Wrote this with double vision left I eye on iPhone and right on tv to the left.

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    • December 29, 2015 at 5:29 pm
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      Hi Matt, steroids – while dealing with it get an eye patch or keep one eye close but switch the covered eye often so it does not grow weak. If you wear glasses like me maybe put tape over one lens, that is what I do, good luck!

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  • December 30, 2015 at 11:25 pm
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    Hi Matt,

    Bit of a random question but would you recommend Copaxone as a treatment, knowing what you know today?

    Thanks so much – hope you have a great New Year!

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  • January 16, 2016 at 8:02 pm
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    Hi Matt, I hope this finds you doing well. I Just came upon your site and your pictures are the first I came across that comes spot on with the way I'm seeing life now. Except for the spot. I do get that sometimes and I have to keep blinking till it goes away. Sometimes it brings a headache on after wards. I understand the second nature seeing with vision like this and driving can be frustrating when your eyes are going back and forth. I have PPMS and no matter how many Rx changes in glasses it just don't work and unfortunately Im no longer a candidate for steroids or any treatments but still make the most of everyday. Is there anything lately that has helped you see a bit better?

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