Do you have vision changes from MS? - My MSAA Community

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Do you have vision changes from MS?

Sandydemop
Sandydemop

Good afternoon my friends, I was wondering how others are addressing vision difficulties. Initially i had shared my double vision was happening late in the day. The steroids were hard on my body but worked on my double vision symptoms. However today it started first thing in the morning (I was driving to the grocery store early which i don't usually do) I've been driving less and less often. What do you do about it? Vision exercises? resting your eyes? thanks.

73 Replies

Sorry to hear of your vision problems. I'm no help as vision is one ms problem I have avoided so far... 🤞

thanks starlight5 appreciate your response. It's not one I would have chosen but here it is.

I’ll try to be brief 🤣 I spent a lot of time talking to a few MDs and my optometrist about my vision issues and they helped me with a lot of great ideas...my neuro wasn’t one of them. I changed the lighting on my phone and on the computers at work, and enlarging the font was very helpful. Not driving at night. Bringing my lunch to work because I couldn’t read the scrolling menu in the cafeteria. Grocery shopping while wearing sunglasses. Full prompts on the GPS while driving since I couldn’t make out road signs, and driving a lot slower. Poor sleep, illness, or exercise could mean no vision for a while, so I planned for what I could and took an “eye nap” when needed. For a while I was using a 50x mirror with lighting to see my face, and used a waterline liner since I could do that by feel instead of sight. Now I have microbladed brows and lash extensions, so I just wash and go. When others were driving I had to keep my eyes closed or sit in the back drivers seat because I saw cars much closer than they were and kept thinking we were going to crash. Not fun for the drivers, or for me 😱 I swapped parking spots with my husband so I wouldn’t hit anything. I had to close my eyes during some movies because the information was too fast 🤷‍♀️

I have a little lighting at night in my room so I can see when I get out of the bathroom instead of being blinded for a few minutes. If we have to do a long drive, I take ketones with me because it helps (had an eye exam because I thought I was crazy, but the improvement was real). I take some now if I wake up with crap vision too, but it’s usually a combo of crap.

I think that’s a decent summary 🤣 Some of my issues are reflex related and may not make sense to you. The worst was double vision and it started to resolve slowly over 3-12mo after that relapse, which seems to be on par with what the textbooks say. Now that it’s been a few years living with central vision loss, my non dominant eye has adapted and I can take photos with my camera again, as well as hit a bullseye with decent accuracy using that eye.

Eye issues are infuriating!

Sandydemop
Sandydemop in reply to kdali

hey kdali what are keytones? How did you take them? And thanks for sharing your experience. Hit the bullseye with what?

kdali
kdali in reply to Sandydemop

Exogenous ketones, I use a product called ketoneaid I discovered by listening to a cyclist talk about using them in competition and then a navy seal using them for training dives. I had used the salts before which were recommended by a lady who also has MS, but they don’t work as well and cause diarrhea, so nope. At a firing range, I went to a ladies night and basic firearm class and was shocked at how well I did 👏

Sandydemop
Sandydemop in reply to kdali

👌 thanks. I'll ask my nutritionist about keytones

Sandydemop
Sandydemop in reply to kdali

kdali 😍 I started talking to a vision therapist who has me doing some interesting things. I'll tell you more if you want to know and if it works.

kdali
kdali in reply to Sandydemop

Yes please!! I’m excited to hear more 🎉 My most recent event has caused the vision loss to expand, so now I have a different MRI to do whenever someone calls me. How did you find a vision therapist? I’m ready to quit this MS game 🙄

Sandydemop
Sandydemop in reply to kdali

I wish i could quit this MS game. Go on the internet and Look up Meir Schneider. he was born blind and taught himself to see. Now he drives without glasses! so I can't afford to see him but I'm seeing one of his students who also restored his own vision. I've only had two zoom sessions with him so i have to see if it works before I'd recommend it.

kdali
kdali in reply to Sandydemop

Will do, ty!

wolfmom21fl
wolfmom21fl in reply to kdali

my eye issues started with pain in my right eye, followed almost immediately (less than a week) by double up/down vision. i saw the ophthalmologist who gave me some NSAID eye drops to use to reduce the inflammation and pain in my right eye. this helped tremendously but didn't help the double vision. then i started slowly losing my peripheral vison. that was quickly followed by floaters in my eyes.. first one then the other. shortly after that I developed cataracts in both eyes which explained why i had such a hard time seeing at night especially. I had both of the cataracts taken care of and have 20/25 far vision now in both eyes but need readers for close up stuff.. considering I was legally blind without corrective lenses at 20/525 before the surgery for cataracts, i would say that is a great improvement. I still have peripheral vision loss however. I also have developed macular degeneration. I fully expect to go blind before I die due to MS and its many progressive issues and judging from recently progression, that may happen sooner than later unfortunately.. Best of luck to you in your own journey. with your own vision issues. I am going to research and talk to my neuro about this ketone thing tho.. thanks for mentioning this

dear wolfmom21fl ugh. You are going through a lot. I am glad you are engaged with this group and thanks for providing the info. Do you do any eye exercises? Glad the cataract surgery was so successful.

ty... i am researching different things now.. my appt is on Tuesday and I want to be ready for the Doc.. I hope he has time for all this LOL

@wolfmom21fl please share the results of your research

kdali
kdali in reply to wolfmom21fl

Thank you! I’m a weird one that doesn’t have pain, just a mild ache. Be prepared to be looked at like you have 3 heads for mentioning ketones 🤣

Sandydemop
Sandydemop in reply to kdali

I don't consider myself to have pain either. A dull ache or spasticity is more descriptive. I have done weird. it's a good look.

kdali
kdali in reply to Sandydemop

Wow! My symptoms have been ignored because I wasn’t dying in pain. I’ve actually heard a neuro at a talk telling how it’s always super painful. I thought it was just me. Weird is my people.

Sandydemop
Sandydemop in reply to kdali

As we know on many levels I am your people

kdali
kdali in reply to Sandydemop

🤣🙌🤗

Sandydemop
Sandydemop in reply to kdali

@kdali I don’t like that your neuro is ignoring you. With MS we all know everyone experiences symptoms differently so nothing is ALWAYS anything.

kdali
kdali in reply to Sandydemop

Oh, not my current neuro! My first neuro, and an optho 14 years prior, and a few less obvious MS symptoms with MD visits in between. Those first two specifically told me I didn’t have MS, and the neuro refused to do a brain scan despite having clear signs. My husband knew it was MS, but I had a bad case of denial. I got sorted 8mo later when the next relapse hit. I’m actually putting my big girl pants on and going to see a specialist in a few months, as well as entertaining other add on treatments.

You are so right! It’s a weird disease, and one that can become a dumpster fire when we or our MDs ignore things that are not “textbook”.

Sandydemop
Sandydemop in reply to kdali

dumpster fire is a good description. please tell me/us about the add-on treatments you are looking into. So glad you changed neurologists.

kdali
kdali in reply to Sandydemop

The one at the top of my maybe list is MSC and I’ve found a place I like, but now I have to think about it for a while. Another is LDN, but I don’t know yet where or who to ask about this in my area. I’ve looked into Coimbra protocol again and I’m still meh on that one. I know I need a 14 day fast, but there’s always a fun event/excuse that comes up. The one thing I am certain of is lifting weights...I just have to figure out my new limitations after this flare. I’ve started taking choline again after watching a talk from Dr Thrower, but don’t expect to “feel” anything different. I did order the urisolic acid someone mentioned here because weight lifters use it and I’ll use it like they do and see what happens. Are you considering anything outside general recommendations? It’s difficult for me to talk to people about extra things because MDs say “no” and believers in x,y,z are very “stop taking DMT’s!”. Makes me throw a wall up immediately and I change the subject. I stopped using the vibration plate months ago because it made tremors worse, but I may give that a solid nudge soon too. I’m feeling better, so I hope this hell period is almost over and I can crawl out of this hole 🙏

Sandydemop
Sandydemop in reply to kdali

Hi kdali I am not one to give up on DMTs. Don't know or want to know where I'd be without it. I do like to try alternative things to add on. I changed my food to whole food plant based. I do exercise with Themsgym.com. I am doing "eye yoga." I go to OT and will go back to PT in June. So like that. Nothing too extraordinary. I have thought about LDN but don't know enough about it and I (try to) play piano, cranio-sacral therapy and lastly I am going to start a new treatment for depression not medication (trans-cranial-stimulation) very soon. Hope you feel better soon.

kdali
kdali in reply to Sandydemop

Eye yoga might be one I could actually enjoy 🤣 or at least not fall over while attempting. I have a friend who is on LDN and sent me a lot of info on it. A lot. Hours. 😴 Ohhh, piano is fancy! That has to be an awesome brain exercise 🥰 I’ve always admired those with any musical talent 👏 Yes, I’m excited for your review on that and I hope it works well 🎉

Sandydemop
Sandydemop in reply to kdali

thanks kdali not fancy at all. still a beginner. I love the sound of piano but not my own playing. Well maybe a little. and it's an electric keyboard, not a real piano but i call it my piano. Iti s good brain and finger exercise. I try lifting my 4th finger on my right hand. Try it on your non-dominant hand. it's hard! Anyway, past my bedtime. Good night. thanks for your thoughtful responses.

So you vision is getting worst since the last time we talked?

Have you talked to your dr yet?

Sandydemop
Sandydemop in reply to rjoneslaw

Yes, it was happening at the end of the day but now it was first thing in the morning.

Sandydemop
Sandydemop in reply to rjoneslaw

I have not talked to my neuro since March. I have an appt. coming up. after I get the next round of MRIs.

i have shots into my left eye for they are trying to save the sight on that eye for i had a large black spot in the middle of the vision so far it is doing it to keep it to see out of it just not as good as before but ha i can still see out of it and right eye is real good ...take care and keep an eye on it ..i was sent to an eye specialist ...

kdali
kdali in reply to twooldcrows

The shots sound terrifying! How often do you get them? I’m excited they are helping!

once a month for can't go any longer for a fluid builds up others go for like three months or more depending on what is going with them ...they did get rid of the big black square in the middle of the vision in my left eye no problems with the right one ...thank goodness ...

remarkable what science can do. So glad you are able to see. I used to take things like vision, walking and use of my hands for granted. Not anymore.

Unfortunately, nearly nine years after my initial diagnosis in May 1994 (didn't start on Avonex until September 1997) I had a bout of optic neuritis during a VERY STRESSFUL TIME at work. I had just been promoted six months prior and completing my MEd was contingent on holding and keeping the promotion.

I NEVER DISCLOSED; I had worked there for over five years (in several increasing positions of responsibility---I thought the faster I ran and the more I achieved that I could "out pace the MonSter"---but I was dx at age 25 and I had just turned 35---DENIAL & Avonex & Work-a-holic nature had me keeping my head in the sand!

It was the early semester of Fall 2003. I had just started another semester (both at work and at completing my MEd). I had no time to take off or seek treatment. . .DENIAL. ..JUST KEEP MOVING. . .FORWARD. . .!!!

I DON'T RECOMMEND THIS. . .I HAVE A LARGE BLIND SPOT IN MY RIGHT EYE (the spot has just gotten larger as I've aged) but thankfully that's all. *crossing my fingers and toes*

Best of luck to you!

🙂🙏🔮😱

Sandydemop
Sandydemop in reply to DM0329

thanks for sharing DM0329 I appreciate what you've gone through. glad you are taking better care of yourself now. I am working (from home) in my full time private practice. Dancing as fast as I can with a few breaks in between patients. Trying to get my symptoms under control. Mostly vision, walking and dexterity. Grateful I can still work.

Double vision is how my ms started and how I got diagnosed. Most times it's ok, but tends to be worse in the evening or at night (probably when I'm tired).

At times, I've used an eye patch because I see better with only one eye. (this is actually what they gave me the first time I went to the eye doctor prior to mri, dx, etc...)

Double vision also shows up if I drink more than 1 glass of wine.

It's also more complicated because I got cataract surgery (yeap, 40 years earlier than most) and one eye is set for far distance, and one for reading. So depending on what I need, I'd put the patch on one eye or the other.

DMT has made it go away in most cases. It's never gone worse than at Dx.

Good luck with all your troubles. I hope your find a place where you feel your have regained some control

thanks anaishunter I also find i do better in the morning and worse in the evenings. I understand you with double vision and drinking. Those two things make for a bad combination. thanks for your support. I wonder how do you know when you are out of relapse in remission? I can say I've had a slow progression over 11 years but this is my first actual relapse with RRMS.

Sandydemop I was diagnosed 3 years ago now and I don't think I had a flare/relapse since. This is a big question for me: How do you know you have a flare?

Last year my infusion was delayed and it ended up being 12 months after the previous one. I started to have more symptoms, like foot drop and fatigue but nothing close to or worse than before I got diagnosed. Neuro said most likely small inflammation but never called it relapse. MRI one month later showed no activity.

So I don't really know what's a relapse. There are ups and downs. Symptom-free days and some bad days. If I do too much one day, bad things start to show up - lack of balance, tripping, bladder control issue. If I don't do enough several days in. a row.

I count my blessings by the number of days where I feel better than prior to diagnosis. And it's pretty much all of them

anaishunter It sounds like you have not had a flare up. Maybe even staying stable overall. There are invisible symptoms like bladder or confusion. A flare is of course individual. I want to say you'll know it when it happens. Some people get a brief paralysis and need to be hospitalized. It's usually a dramatic change for the worse. My flare is related to double vision but I've had a slow progression in my walking deterioration for the past 3 years. The doctor treated my flare with IV steroids. Keep asking questions. You're doing great. The best advice I would give you is to exercise every single day, whether you want to or not. It's like putting money in the bank. you may need it later. It's always better to have it and not need it than need it and not have it.

so agree, every day, do something, but don't do too much.

Optic Neuritis was my initial symptom 21 years ago. Took quite a while to get diagnosis. Thought I was going blind--vision went from 20/20 to 20/400 in a matter of weeks. I found a wonderful neuro-ophthalmologist that told me "my patients don't go blind." Take a low dose prednisone daily, use eye drops for moisture & seem to be doing ok. Had to give up driving , but I've gained a chauffer! Life is good. It's all in how you look at things. .😉 best of luck to you. Keep smiling...😊

thanks 2littletime perspective is everything. Glad your vision is better. Are you taking oral steroids regularly?

Yes...I take 5mg of Prednisone daily.

How is that affecting you? I understand it is hard on the body. I had an IV infusion recently and then a 10 day taper. Very rough. thanks, San

The IV infusion & taper is rather rough, yes (oh how I remember 😞) but the 5mg is a maintenance dose that I will take forever. Really no problem with it, I think this old body is just used to it. Hehehe Hang in there, Sandydemop

I have vision symptoms all day long for many years. It's frustrating. In order to maintain my job and independence I had to develop habits to increase driving safety - for me and the others on the road. Sometimes I have to patch my R eye and I ways take a few extra seconds at stoplights and traffic signs to make sure it is safe to proceed.

Sandydemop
Sandydemop in reply to cindyrn68

hi cindyrn68 Glad you are still able to drive. gives me hope. Not jumping into the intersection would be a good habit. Thanks! Yes, the husband is doing most of the driving and now with delivery everything really little need to go anywhere.

and glad you are still able to work.

Double vision is not one of the many vision things I've experienced. I've done the optic neuritis thing 7 times. Had the first time treated by my neurologist hospitalizing me to pump me full of heavy duty steroids to try and "reset" my immune system. Since then, my Opthalmologists simply monitored, recording the progression using fancy video game like devices to map out my vision loss on paper. After a while, I simply let the optic neuritis run it's course like any other relapse the last few times. Luckily they haven't come back, along with any other relapse in over 5 years now. BUT, the best (or worst) vision thing that happened to me was a month-month & a half of broken vertical hold vision. Now that was really, really annoying. Old tube televisions had a vertical hold adjustment, and when it was off, the screen would scroll, from slow to fast, till you readjusted the vertical hold. Imagine, the whole world scrolling like a television with vertical hold issues. No way to stop it. Try going about your day with that. Never stopping every waking moment. Couldn't stop working. Had to be driven everywhere. Could not even imagine attempting to drive. But, pushed on with it, and actually started getting used to it, when it eventually slowly went away. None of my doctors could help. They explained it, theoretically, but had never really seen it before, nor had any suggestions.

Not related, Yes, there were many trips to get my eyes checked, for it just doesn't seem right issues. Usually, I was told your eyes are fine, must be a M.S. thing? Give it time and call me back if it doesn't resolve in....

It's been fun. Luckily it eventually all goes away. Even the accumulated vision losses left from having optic neuritis so many times, which I was told would never go away, eventually did. I like to think it was like so many of my M.S. "things" because of healthy diet changes, avoiding processed foods, eating like we all should, lots of fruits and veggies, lean meats, fish, seafood... Prepared healthy. No more drive thru burgers and fries with.....

Dear Mark, thanks for the reminder. I remember those old TV's good memory! and so glad you have been relapse free for 5 years! I'm also doing the dietary thing and it definitely helps. When doctors don't know what to do they say "It must be MS," right? Anyway, sending good wishes your way. thanks for taking the time to write back.

I have prisms in my glasses prescription that helps some with my double vision. Years ago, at least 10 years before my Dx, i had an episode of double vision and the doctor did an emergency MRI but didnt say MS but gave me fresnel stick on prisms to put on my glasses that worked great. When my vision gets bad it helps when i close my eyes, even for just a few minutes, to give them a break. A nap is awesome if i have the time for that,

thanks Neworleanslady

I'm so sorry you're having vision issues. Let us know how you're next Dr. appt is.

Leslie

Sandydemop
Sandydemop in reply to lbenmaor

Thanks Leslie, I have an appt. tomorrow. wish me luck :)

Sandydemop
Sandydemop in reply to lbenmaor

My doc said to do eye exercises. Shen noticed the edge of where my eye lands and then jumps as I look to the corner. Have to practice that more. It's true. we don't use that muscle. Either we look straight ahead or turn our heads. very rarely use the peripheral muscles in the eyes. Anyway, that's my report. Also diarrhea frequently is making me weaker than usual. I have to get settled down before i can expect to feel better. thanks very much.

lbenmaor
lbenmaor in reply to Sandydemop

I'm glad you're starting to feel better!

Sandydemop
Sandydemop in reply to lbenmaor

thanks Leslie, Have a great weekend.

lbenmaor
lbenmaor in reply to Sandydemop

Same to you Sandy!

I have always had double vision since the hit on the head that started my MS. Vertigo as well. But its been getting worse in the last year. Eye patch is something i am gonna have to try.

Now wen i look up the floor starts to move like in a fun house so have had to slow down the walking on the treadmill. And now i see black spots floating around at odd times.

For me as well, turning to brightness of the phone down and keeping house some what dark helps. Bright light is something i avoid. I take nausea relief stuff i get from my mail order pharmacy to help wen i go out. I also no longer drive as much.

I see my eye doc in may so gonna ask about the prism thing. That could help a bunch. My double vision now starts when i first wake up. And at night when i get up to let the dog out or go to the bathroom i see hallucinations. Those r fun - NOT. Pink flamingos all over the bed and floor are not what you wanna walk thru just to go pee. 🤣🤣

awful Midgey_Midge06 but you seem to have a handle on it.

When i was diagnosed the neuro told me most of my lesions were on my occipital lobe. Which so explained why my migraines made me so light sensitive. I guess in the back of my mind i always knew i had vision issues. I started early on in life putting things back in certain places like keys etc so i cud find them by feel and muscle memory.

My neuro mentioned prism glasses to me too. Do you have them now?

No i dont. Plan to ask tho

yes, after i posted i saw you said in May. it's so interesting. I wonder how they work.

just another MS thing i am getting ready to see a eye dr soon maybe new glasses will help some but i wish it was that easy thats how i got my news 10yrs ago went complete blind in right eye lucky for me my eye dr knew right away what was going on same day +5days in hospital with intro steroids yea it came back Thank God but just like all the other MS nonsense never back to where it was and i know there are things you can do kinda got to learn how to focus blink etc. focus for me is getting tough bright sun is hassle and lights

thanks for sharing Timothy. Could you say more about learning how to blink properly if there is such a thing? thanks,Sandy

I wish I could but I dont know of formal way i find myself not blinking enough so i try to watch how i am focused and blink more i do know there is excercise for your vision but with me its a constant deal to stay focused on everything walking driven etc.please let me know how you make out and if you find something that helps you ditto for me to you

oh yea i forgot i just have to remember about blinking to do it but what helps me to excercise and makes me think about it is when i am driven my truck which i spend alot of time in because of my ms and walking but 5 things i do to stay focused is 70%looking sraight out the windshied than the rear view than the right side mirror than the left than strait on and i do that alot it keeps me focused and excercised good luck theres nothing good about this thing except here where we all in the same boat i got better info from people who have the same thing as me than any dr i have ever seen

timothy228 thanks for saying that. I asked my neuro doc if there is such a thing as vision therapy and she dismissed the idea. and the same with the neuro-ophthalmologist. then I looked up this eye yoga thing where it said to do what you do--look all different directions. then when I went back to my neuro she said to spend time looking in all different directions. So there! They just don't call it eye yoga or vision therapy but it's the same thing. Try looking all around your eye socket in a circle and then go in a different direction. it really stretches the muscles.

right on i got the same response from my (experts) keep doin what your doin and call it anything we want

Why don't the experts have an open mind to things they don't prescribe?

Come on Sandy you know why they all have a vested reason them selves and their partners in crime whatever pharma co product they make the most on ask a specific ? and all you get is maybe could be lets try this I been on Occevus for about 2yrs have had ms for about 10 yep newest greatest med on the market only need 2 infusions 6months apart does it help?a little the first 4 months than kinda wears off and can be real tough till you get the next one nobody told me about that found out here lots people with the same issue about 5yrs ago i did some program with horses that helped me a real lot i would like to go back again if you need the info for the place let me know and we can talk again

Hi Tim, thanks. I did a therapeutic horseback riding thing with the MS society a couple times. Loved it. I don't think it's happening due to covid. Tell me about your experience. Also, I did a supported waterskiing (sitting) a few years ago. that was a blast.

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