Last reply 2 weeks ago
optic neuritis

Been diagnosed with ms for nearly a year fully although had cis for 5 years before that. I have built up quite a horrible health anxiety with it constantly worrying when a relapse will come!!!

I often worry about my eyes because sometimes it seems like my right eye is sore/aches.

Just wondering for those of you who have experienced ON what it feels like and whether it came on suddenly or whether you felt pain first or vision lost first??? its probably my main anxiety as sometimes i will even have a bit of dust or something on my glasses and for a couple of seconds think OH GOD ITS HAPPENING! feel like a complete idiot afterwards but this morning my right eye has started to ache a bit so the paranoia has kicked in!

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emma_t
2 weeks ago

@blagaman182 Hello 🙂 I fairly new to this and still on the road to a definite diagnosis and I feel like I’m almost at the end of it. My first symptom was optic neuritis, they are now assuming that was it (been waiting months to actually see specialists and by the time I did it was away). It came on for me with really sore pain any time I moved my left eye and also a weird blurry ness that was at the top of my vision and as days went on it crept round my peripheral vision. I could still ‘see’ but it was more grainy… and foggy or just wasn’t right. Anyhoo I am the same as you I was very anxious and waking up everyday wondering if it would ever get better and it did, after 6 weeks. The vast majority of people who have an episode of ON get their vision pretty much back to normal. It’s been like 5 months since that and my eyes are fine. If you do think it’s that, the worst thing to do it panic. I wasn’t given any steroids for that because they didn’t know why I had it so I had to sit and wait it out 🙄 but if you do get it, steroids should speed up the recovery. I know that’s what I’ll be doing if I ever get it again.
You know you’re body more than anyone so if you think you’re vision isn’t right and it’s persisting/getting worse after a few days, get in touch with your MS nurse or neuro. The pain you have could just be a bit of strain and nothing to worry about 🙂
Hope this helps! Emma x


itsmewithms
2 weeks ago

I was Dx with MS in 2005 when my foot stuck out at a strange angle but I could still walk fine. A few years before that they suspected I had ON when I was in my 2nd trimester but didn’t do an MRI as I was pregnant and at that time they still weren’t sure it was safe for the fetus and ear development.

I had a strange blind spot in my lower right quadrant of vision in the shape of a kidney bean. It didn’t move and had strange diagonal stripes through it. It resolved after two months when I moved into my 3rd trimester. I still had find vision to work and drive through that time but there was the annoying spot without vision.

Recently I went to some of the best Neuros in the US at the Mayo hospital in Rochester Mn USA. When I described this symptom they said that didn’t sound like ON at all but rather an Optical Migraine. I do not get migraine headaches but my mom did and there was no pain associated with the episodes. I occasionally have a blinking shape (like the letter C) in my vision with bands in it. It is quite small and doesn’t affect overall vision. There is no pain associated with it or headache. I am thinking these are actually optical migraines and have resolved quite quickly, within an hour.

Right now I am having a case of ON in my left eye. They are big blotchy spots in my vision and my vision is overall blurry in that eye. It is fine in my right and I continue to operate quite fine with the one eye clear. I have no pain associated with it or headache thankfully. It sounds like most people do.

Any impact on my walking or vision my Neuro takes very seriously and sends me in for an MRI as soon as I report it to see if there is an active lesion. If there is he prescribes me 1gr of steroid per day giving through IV. I can set up a home infusion so I just hook the little steroid ball to the IV each day and let it feed in. I start a 3 day round of this on Monday. This will be the 4th time in 15 years I’ve had this done. That is how it is typically handled in the US from what I understand. My balance and gait are also affected by MS (foot drop on right side) and I will have a Neuro Psych eval at Mayo in a couple of weeks…we’ll see what they can measure in cognitive impact and if they measure brain volume loss. Should be interesting.

It will likely resolve and hopefully quickly. In the US they pump you up with steroids for a few days if there is visible activity in your MRI. Doesn’t sound like they follow the same protocol everywhere but it resolves my issues within a couple of days and I still feel and sleep fine. It doesn’t sound like it goes as well from others if you check other posts on Steroids by using the tags above or the magnifying glass- Good luck hope it resolves soon for you-


blagaman182
2 weeks ago

Thanks for your replies. As expected when thinking rationally nothing has come on and had tired eyes. It’s good for future reference to look at and have an idea what it might feel like. Thankyou.


highheeledfagin
2 weeks ago

I’ve had ON 3-4 times and it usually takes an hour or two of knowing that something is off but not being sure what. Apart from the time I woke up mostly blind in one eye, the signs haven’t been dramatically noticeable right away: my vision seems a bit more strained and one eye aches whenever I move it. Sometimes things that I know are white look a little bit pink – like a white T-shirt that was washed with a red sock a few years ago.
Once I suspect ON, I try to read subtitles, covering one eye at a time and do this back and forth to see if there’s a notable difference between the eyes.
Next, I go online and do an Ishihara colour-blindness test. If that gives me trouble, it’s hospital time.


extrakate
2 weeks ago

Hi @blagaman182
I am sorry to hear MS is making you anxious. I can only say that it is possible to learn to live with the risk. I visualise it as a balancing act – like a highwire act. I was diagnosed 10 years ago after an ON episode affecting both my eyes, stopped me from working for several months. My ON was quite dramatic, I blinked and suddenly I could see a tear in reality where the light was coming through as white. It was almost like the whole of life was just a stage set. The second eye went grainy and everything started moving instead of staying still. Optometrists are really good at checking for ON if you get worried.

My gait and balance were affected but have more or less recovered. I have taken whatever treatments were offered (in the UK) and am pleased to say I’ve stayed fairly healthy. I had a further problem with my left arm and this saw me move from Avonex injections to Fingolimod tablets. They’ve made a big difference to me. It feels more like being alive now. My dexterity with my hands has reduced over time, but I can still type. I tend to adapt – I don’t wear earrings any more so I’m collecting rings now. Hope this helps.


sfrox
2 weeks ago

Sorry you have experienced Optic Neuritis. The problem with MS is that some symptoms are just old symptoms that aren’t really a relapse, and some are new. Your vision is precious. Always tell your doctor if you feel your vision is sub par. I have had ON for about 20 years and because I always thought it would resolve on its own, I have ended up with permanent damage. Doctors don’t see what you see. Press on if you feel something is not right, but at the same time, tryto do things that take your mind off worrying about your health. All the best.


itsmewithms
2 weeks ago

I complained about gait/balance declines in June and the MRI didn’t show active lesions so my Neuro said it was “just part of my decline” and to wait it out…but, I call him again in November and say I have some blurry vision in my left eye and then he acts fast ;-0 It is one of the symptoms he really responds to…He called for another MRI (4th this year now!) and saw thinning of the Retinal Wall and put me on a 3 day IV steroid push, IGr a day. I just finished the 3rd day this morning and can’t say I “see” an improvement but at least we tried. My vision is still find to read and drive so I wasn’t as concerned as he was.

I meet with my optometrist tomorrow and he is really good but he says this is an “optic nerve” issue and not an eye issue so belongs to my Neurologist. He takes measurements of my retinal thinning and monitors but that is all he can do for me. He also can do a “visual field” test to measure the impact so he does those from time to time an I called his office to make sure they are aware it may be required…again.

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