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Strange eye problems new to me (not ON)

Hello all

I’m wondering if what I’m experiencing is an MS thing or not, so would value any contributions / opinions.

The trouble is that when I look down for even just a few minutes, my vision clouds, particularly the left eye, my eyes want to close (often do) and then I’m useless, my brain switches off, and all I want to do is sleep. It’s only been happening for the last week or two.

The worst of all is reading and writing. So for instance, I was trying to do the crossword in the newspaper. It’s something I’ve done almost everyday for a good 15 years. I write with a pencil (so I can rub out my mistakes). I spent a few minutes doing the crossword, could barely see my (already shoddy) writing or make out what the letters were meant to be.

I can read something held vertically, or almost, with no problem. So I can read a book (Kindle Paperwhite) with no trouble and watch TV.

I tried to write this yesterday, lost the post halfway through and didn’t have the eyesight left to start again.

This only happens when I’m looking down, it’s almost impossible to write this amount, I’ve had to stop, look away for a good long time (some of the time with my eyes shut) and then pick it up again. And I’m a person who is normally able to write long posts and keep going for hours.

I had my eyes tested only in January. I was bothered that my left eye was getting more easily tired and I do have a choroidal nevus in that eye (often called a ‘freckle’ and almost always symptomless and non threatening). My eyesight hadn’t changed, in fact the optician thought my sight is actually slightly better in that eye. And the nevus hadn’t changed so it was a ‘thanks but we don’t need to see you again for 2 years’ situation.

So right now my left eye is so blurry, it slightly hurts. I haven’t been on here for a few days because of this problem. So any PMs that I’ve not answered, sorry - this is as much as I can do. Reading it over I’ve got my left eye shut with my thumb pressing on it.

I’d be interested if anyone else has had any similar experience, whether MS or not. Or if anyone has anything useful to help me out. (What happened to Dr Geoff? He probably would have known - sorry if you’re reading this Geoff and are aggrieved that no one asked where you were until your knowledge was needed. Your views have always been valuable, so you are missed!)

Many thanks. Now I’m going to shut my eyes!

Sue

Sue,

That does not sound very nice at all, I do hope that things improve soon. Whenever I read large blocks of text there seems

to be a limited amount of time before my brain switches off, and when I am lying in bed trying to play patience on the iPad

sometimes the cards swim into a blurry blob , but after a bit they are clear again.

I hope that you speak with a medical professional to help identify any issue or to offer a means of mitigation. I know what

you mean about Dr Geoff, his knowledge coupled with writing style and empathy are very much missed.

Keep as posted as and when you are up to it.

Mick

I have had various double vision/ON/visual field troubles over the years, but nothing that sounds like the thing you are describing. Best get it checked out, Sue. Does your local hospital have an emergency Ophthalmology Outpatient clinic to which your GP can refer you? That can be a quick way of ruling things in or out and making sure it isn’t something that needs fixing fast.

Alison

I have had all sorts of weird things with my vision.I once had double vision and a thing that i could only see someone if they were stood to the front of me but to one side.I had to position them to see them and if they moved i couldn’t see them at all.Also i have lost all peripheral vision in one eye for days and then it just came back suddenly.I have both eyes clouding badly at same time and can’t see anything for a few minutes too.So hopefully you problem will just go off as quick as it came on.Best to get it checked though.Oh the joys of MS!!

Sue

(Hi sister)

hope that your other wonky body part is behaving for you.

love you sis

Carole xx

Hi sue i am surprised you have let this go for 1 to 2 weeks.

when i first started this rotten journey i had loss of peripheral vision in my left eye, i could not see anything below my eye left. it was my worse one always has. when i start an ON attack it starts with weird peripheral vision issues and the muscle in my eye relaxes so i look like i have had a stroke sometimes. the muscle bit is not always but when someone took a photo my eye shut itself. it was most odd i never noticed it. I also have had it with pain. its not often but peripheral vision and ON go hand in hand. After an ON attack the worse one i had i just fell asleep.

you need to be seen IMMEDIATELY, and don’t leave it another day ok. it could be anything or nothing but any loss of peripheral vision should be checked. SCOLDING YOU LOL. heartAS WE have often said not everything is down to our MS lol. xxxxx

let us know how you get on. xxxx

NB. strangely enough although i feel like my eye sight has deteriorated like you my eye sight is holding steady weird. so it is a brain thing.

Could it be Bells Palsy?

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Hi there Ssssue,

I’m sorry to read about your eye problem. I’m not an optician and have never experienced what you describe, so can’t really help.

But Sue, how would you answer a post re eyesight? I think you would be the first one here to advise getting it checked out immediately. It could so easily be nothing to worry about… but it’s your sight… so take no chances… get it checked, eh!

Is that how you’d reply?

Ben

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sue

ben syms it up i think

do somethung about your eyesa

make a professopnal - you choose- aware of whatd happeming

el x

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Ooh sue. I’m afraid I can’t shed any light on the matter, but it doesn’t sound pleasant. Hope you get some answers…x

Just saying hello there. I’m hoping you have some answers by now. Xx

I have something a bit similar. For the last few months I’ve been struggling to keep my eyelids open. I’ve also got blurred vision with it, most noticeable with reading or looking at a computer screen, but I also have had occasions when I think that a sea fret has come down, then realise that it is my eyes. However I don’t have the marked difference between looking forward and looking down, as you describe. I do have dry eyes, but eye drops don’t make any difference.

I found that when I spoke on the phone, and didn’t need to use my eyes I was closing them - something that I had never done before. And then anything that doesn’t actively require eyesight I found, without thinking, that I have my eyes closed. I am, and have been experiencing high levels of fatigue, both physical and mental, and think the eye issue is fatigue driven. I even found myself, the other day, walking down my stairs, one step at a time, with my eyes closed! I do hang onto the handrail, and didn’t have anything on the stairs to trip over, so I was safe, but realised this is far from normal behaviour!

Your description sounds a little like ocular Myasthenia gravis. But as MS also has major fatigue issues it could be ‘just’ another MS symptom.

Just over a year ago I did have the antibody test for myasthenia gravis and had single fibre emg carried out, both came back as unremarkable. Back then I had muscle weakness that gradually spread up from my legs to involve my arms, but hadn’t involved my eyes at that point. They did not carry out the antibody test for Lambert Eaton (which is rather like Myasthenia gravis, but rather than weakness in eyes predominantly, weakness works upwards in the pattern I had). Both reduce acetylcholine at neuromuscular junctions and which reduces the transmission of the nerve signal to the muscles - hence weakness. I was then (and still am) on acetylcholinesterase inhibitor herbs, which made a significant difference (improvement) in being able to lift up my legs quicker when walking, and this possibly may have taken my EMG results into the normal range. I wasn’t aware at the time that the herbs were very effective acetylcholinesterase inhibitors.

As I still don’t know what is causing this in me, I can’t help more. However, just wondering, have you ever had botulinum toxin injections?

As the others say, do get it checked out. And I’ll be very interested to hear how you get on.

Hello all

Thank you so much for your care, and of course your sensible advice - if I were to read a similar post I’d be advising them to see a professional.

So, I’ve spoken to my GP and seen an optician. They’ve separately told me it sounds like there’s nothing to worry about right now. The optician checked my records from the last eye test (only in January) and once established there’s no redness, infection, floaters, ON, or anything else, said to keep watchful for any changes (keep an eye on it!!). If it changes or gets worse to call them and get them to check it out.

Meanwhile, use eye drops, and to rest my eyes, not do too much staring at a bright shiny screen (like this one!) and to basically do very little that causes them to go blurry.

So, I think that means I’m to take a bit of a break from constant posting on the forum, emailing, using my (new - thanks to Mr Sssue) iPad generally and really give them a break.

This means you won’t be seeing too much of me for a while (that will be a pleasant change some of you might think - a bit less Sssue is no bad thinglaugh!)

But I’ll be back. Thanks to you all again for being sensible and telling me to be!

Sue xx

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That sounds promising Sue,

I haven’t been on this forum much for a while, but when I am here I always look for your posts. You are a very well respected member here, always with wise, caring advice, far better than I can give.

Hope things improve soon,

Ben

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Well said

Great to hear that you are doing what you would advise. I hope that you are back soon, bright eyed and bushy tailed, sharing your wisdom & empathy.

M

Good to hear from you Sue. Take it easy. Xx

hi sue, good glad it was ok. I use HYCOSAN natural. this was recommended by an optician for my dry blurry eyes. it really helped and yes also turning down the screen from brightness and taking breaks lol. at work it was called RSI.

so enjoy a rest ok. xxx

Hello (all interested parties)

Further to my eye problems, I had a sudden thought :bulb: (amazing I know). I’ve had an incredibly dry mouth for several months which has been getting worse just lately, so dry that I can’t speak. Simultaneously my nose has been drying out, so there’s always dried up gunk sitting in my nostrils (yes I am aware this is tmi!). I’ve been taking Trospium since last summer. This is an anticholinergic, like Oxybutynin but which doesn’t have the cognitive issues attached to Oxy in later life. (My urologist suggested it because she ‘often prescribes it to more elderly patients’ - she laughed at that!!)

My lightbulb moment was that I’d been aware that the dry mouth (& nose) were a side effect from Trospium and these effects had been getting worse over the last 4-6 weeks. I looked up the side effects and another potential effect is dry and blurry eyes. I stopped taking the Trospium.

So although my left eye is apparently weaker than the right (according to my optician), so continues to be slightly blurry; since stopping the Trospium the right eye is back to normal and the left is also slightly better.

(Another theory is the one my husband credits with the eye problem is that it’s a side effect from the 2nd dose Pfizer Covid vaccine - this is possible too. I may be testing the Trospium depending on bladder spasms, if they go nuts then I’ll give it another go.)

So a good example of when something isn’t likely to have been caused directly by MS!

(CC - I’ve been using Hycosan too for a couple of years - it even works on slightly hayfever-y eyes - brilliant stuff!)

Sue

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Hi Sue I am glad your eyes are feeling more comfortable. I also use Hycosan Extra for dry eyes. Moorfields hospital advised that I could use up to six times daily. They also suggested Hylo eye ointment at night however this can cause blurred eyes so not ideal for me as I like to read at night.
I do not watch much tv and as I can do very little I spend far too much time reading and on my iPad which is hard on the eyes. Recently diagnosed with glaucoma but so many queries wondering if it is linked to MS.
Sue

fingers crossed that things continue to improve. nice deductions.
M