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Optic Neuritis-got worse then better then worse!

Hi all, I’ve recently been diagnosed with RRMS, I had first attack in 2007 and thought I’d got away with it all these years but here we are. Optic neuritis to right eye started in March which was pretty severe but after a blast of steroids my vision improved. I did however get what they call the ‘sting in the tail’, optic neuritis got way worse for a few days as did the what were mild symptoms to start with on my left side which got way worse. The usual suspects - numbness, unable to walk, unable to use hands properly, heavyness, loss of power, pins & needles, cold water pouring through legs, nerve pain, MS hug… the disability issues have improved over past few weeks, albeit they vary.

However the past 10 days the optic neuritis has got gradually worse again each day and wondered if that was normal or can happen? I was under the impression it got better and that was that? I know I’ll never get my vision back 100% but I could see well enough to drive and work part-time (I’m a designer). But now it’s back to not quite as bad as it was but still not great.

I know heat can make it worse, could it be the weather? I’m also not sure if it’s also starting in my left eye, I honestly can’t decide even though keep closing each eye to try decide! I’ve been avoiding being outside and using a fan loads.

Also - I’m planning on taking my nieces on holiday to the Canaries in October (I intend to go as many hols as possible while I still can) - 5 months on could that still make the optic neuritis flare up?

I’m pretty sure the rest of me is ok with hot weather as I also have Fibromyalgia and each year I’ve went to Spain or Italy on hols since 2010 I’ve been charged up like a wee solar panel with bags of energy and virtually no pain!

Any advice or experience would be greatly appreciated. I’ve rang and left a message on answerphones for neuro & ms nurse. Going to ring eye clinic in morning.

Thanks, Arlene X

Hi Arlene Optic neuritis was my first symptom back in 1991. First I had it in my right eye for a good few weeks and then my vision in that eye went back to normal. I then got in my left eye for a shorter time and then it went back to normal. It then came back to my right eye for a couple of weeks! I was told I had inflammation in my optic nerves, no mention of MS…thankfully, as I had no other symptoms for 7 years. I know they do things differently now. I didn’t get steroids, just sorted itself. I’ve never had optic neuritis since, although I do get double vision when I’m too hot or stressed, especially at work. The heat makes my symptoms worse, in general. Annie x

I did have last post spaced out but showing all squashed up!?

Annie x

Thanks Annie for replying, I’d never heard of anyone else having it vary/come and go in such a short space of time. Not glad you experienced similar of course but glad that I’m not alone.

I’m kinda at a loss, I’m doing all I can to keep cool all week and today it wasn’t even that warm up here anyway. I’ve been to A&E and saw eye doctor but they both sent me away with no explanation. Eye doc said optic nerves look fine and I could read letters and see colours (as if that means nae bother off you go you’re fine). I can barely see the computer screen properly and it’s the same symptoms as the last time.

MS Nurse rang me back yesterday and assured me it would just be the heat. But I thought heat worsening optic neuritis righted itself once you cooled down, instead mine gets worse every day? :frowning:

I’m totally baffled. Whatever the cause I know they’d just give me more steroids anyway which I’m in no hurry to repeat. I think I need to ring MS Nurse back. Have GP ringing me in morning too.

I know I prob sound like a hypochondriac, but when its your vision you know… and I work freelance glued to a screen, if I don’t work I don’t get paid and my main client (I’m like staff to them) has been very patient with me so far but the workload in that place is chronic and I just can’t be off any more, at the moment anyway.

:frowning: thankyou again lovely xx

I’ve learned something this week. It’s that optic neuritis generally (or often) comes with some colours being washed out. Particularly red for some reason. So this would be why the doctor’s asked you about colours. I’ve had a blurry eye, saw an optician who had a good look at the optic nerve and suggested it’s caused by the eyes drying out, so gave me (sold me!) some eye drops.

So actually, the doctor and MS nurse could be right, it might be heat, perhaps coupled with mild hay fever (pollen counts are exceptionally high as it’s been so dry). And very dry eyes, coupled with you still getting over ON could account for the problem.

Plus, when you are newly diagnosed with MS, it’s possible to blame everything on MS. And with eye sight, it’s more frightening than other symptoms.

Hopefully, your eyes will improve, try getting some sterile saline eye drops and give it a go.

All the best.

Sue

Thanks Ssssue for replying and your advice. I’m thinking it is possibly the heat as it was a lot better yesterday when it wasn’t quite as warm up here. Today it’s scorchio and it’s worse again. I’ve got fans. Ice cubes. Cooling spray!

Ah yes, when the optic neuritis was at it’s height I couldn’t see colours or letters with my right eye on those same tests. I’m just confused as to how it can be so bad again without the optic nerve being inflamed. My vision was nearly fine again till the weather turned hot. I know its a good sign the nerves not inflamed mind.

Thankyou, I’ve got the drops I’ve been using since March. I wish that was a solution to try but thankyou so much.

I guess I just need to have patience and for the first time in history wish for a cold summer. It’s not looking like it at the moment! I do also get hayfever and it did cross my mind is that making it flare so it could well be that too.

I always said since first attack years back if it ever came back just please leave my eyes alone but alas no.

All medics have advised be patient, monitor it and come back if it gets any worse.

I did want to book a holiday to the Canaries to take my nieces this October. I’m just not sure what on earth to do?

Will my eyes become less sensitive in time? Heat doesn’t make any other symptoms worse.

I also hope to go a fair few other big holidays to USA and around Europe before the proverbial perhaps hits the fan in the future. But these places can be visited in winter and it’ll be cheaper!

Thankyou again for your advice and help, much appreciated.