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Optic Neuritis- Could do with some advice please

Hi,

Just been diagnosed after experiencing the worst Optic Neuritis over the last few days. I can’t be treated with steroids as it would affect my electrolytes & then my heart condition. I’m really scared as I’ve got bad damage in my right eye already from previous attacks (I now know the symptoms!) & it’s affected my left eye as well a bit with loss of depth perception & right field vision.

I’m really scared at the moment about loosing my vision in the future. I know so little about Optic Neuritis & don’t know how to cope with the pain & visual problems or the fear of permanently loosing my sight. These are the worst eye symptoms I’ve ever had.

I’d really appreciate any words of support.

Suzyx

Hi Suzy

Sorry to hear that you are having to cope with ON at the moment. I have had 3 episodes of this over the past 2 years. The first 2 times it did not last too long and my vision returned to almost normal. The last time was 6 months ago, and is very slowly improving, although it flares up when I get hot (uhthoff’s phenomenon) . It can be very frightening I know.

Do you have an MS nurse yet? Mine is very helpful and they are able to advise on pain medication. Also, maybe they will speak to you about DMD’s. I was diagnosed in May this year, and recently started Tecfidera.

Sorry I can’t offer any real help to you, but there are lots of people on here who may be able to offer advice and support too.

Take care

Ang x

Hi Suzy, i had it bck in Jan 2013 upon waking total loss though it had been hurting for months before and i was a typical bloke bloke i will go docs if it doesnt go away and it didnt i spent 6-12 months total blindness in my left eye, now left with severe double vision as i have little light through my left eye now nearly 3yrs on, i have had it in my right eye but it faded within a few weeks and didnt effect my right eye vision at all.

Its not nice and i hope it eases soon for you

respect sheep

Hi Ang,

Thanks for your words of comfort. I’m feeling really scared right now as this attack has made me recognise how many times I’ve had ON before. The previous attacks have mainly pain or a bit of burning in the eye or light sensitivity. I know I’ve had these symptoms on & off for years & I guess that’s what’s done the damage in my right eye that’s become permanent.

This time though it’s really bad though. I’ve had it for a week, lots of burning & pain when I move & loss of vision. The biggest worry is my ‘good’ eye is now having problems with loss of field vision & colour loss. Best bit though is today after having a shower, the heat has started the horrid vertigo! I love it! (not) Hopefully it won’t last as long as the last flare up (it lasted 3 months, just the vertigo that is! )

I’m unfortunate in that I also have a heart condition that means just about all the MS medicines available affect my heart & I can’t have them. Only bit of good news is I’m on Amiloride which I understand may be ‘neuro protective.’

Susiex

Hi Sheep,

Thanks for your support. I guess in some ways I ignored the symptoms I was having too & the result was a permanently damaged right eye. Mind you, I always got a referral to the hospital after the symptoms settled down so they could see the damage but not active ON.

This time though I just knew that I had to get to the Eye Infirmary urgently & the good old NHS stepped up, sending me straight there & it’s finally been seen by an opthalmic specialist.

I can understand how you left your eye problems & I’m sorry you have the difficulties you do now. My husband would be exactly the same as you & leave it until I nagged him to go to the doctors. Double vision isn’t pleasant. I get it in low light & I guess that’s from old damage when I didn’t see an eye doctor.

I’m just hoping that this ON flare up will not damage my left ‘good’ eye too much. Time will tell.

Susie

dear suzynador,

i am very sorry to hear of your eye ball issues; i dearly hope they resolve completely and as soon as possible for you.

i noted your mentioning that due to cardiovascular problems, you are excluded from most MS DMDs. i too have certain heart based complications (although thankfully mild and seemingly controlled,) but these did not mean i was not able to start on tecfidera.

if you are not currently on a DMD but would wish that you were, i would recommend you press the idea of you starting tecfidera.

all the best to you.

Hi,

Thanks folks for the kind words. I really appreciate it. I’ll be seeing a neuro on 22nd September & will have a chat about any meds I can take to help. I’m waiting for my cardiologist to let me know what I can & can’t have as I am very concerned about further damage to my ‘good eye’.

The neuro I’ve been seeing for many years with the symptoms has sadly left the area & I’ve seen different ones which doesn’t make life easy as continuity of care is so important.

Susiex