This is all new to me - optic neuritis

Hi all,

Looking for a bit of advice really. I was diagnosed 7 years ago when I had a short bout with double vision. I’ve had nothing else until this year when I was having issues with my vision out of my right eye, eventually being diagnosed with Optic Neuritis in one eye, albeit through me asking for answers, rather than them telling me.

I feel I’ve really had to fight for support from the eye hospital, with them just saying I should notice improvements over time and it could take upto 6 months. I’ve had a couple of OCTs and had my eyes dilated so I’m sure there is nothing too serious otherwise I imagine I would have been told. However, I’m struggling with my vision in the way that walking around and doing my job (teacher) can be a bit much as I feel that my image out of my right eye and the image out of my left eye aren’t blending well. It’s almost like my right eye is lagging behind slightly and making moving around a bit blurry. This can be a bit overwhelming during the day and is stopping me doing things I enjoy like running etc.

I’m awaiting an MRI and it’s really starting to grate on me. I just feel like the advice I’ve been given of “just give it time” isn’t very productive or helpful. I suppose I’m just looking for any advice on actions I could take, but also any comments on whether what I’m describing is a normal experience of optic neuritis. I’ve contacted my MS nurse twice but heard nothing back too.

Really appreciate any advice you wonderful people could share!

Thanks in advance.

Andy

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Hi Andy
I’ve very recently been diagnosed with RRMS and trust me I’m struggling with it abit. I may not have the best advice but I can relate to you atleast.
I really had to push my GP to get myself an MRI for my symptoms, being told I should just do a headache diary at the time. But thankfully they listened eventually.
Like you I love running but I can no longer do this outside due to having Uhthoff’s syndrome. Which basically makes my vision white out or become blurry when I get hot. I probably shouldn’t run at all but I run on a treadmill in the gym so I can’t run into anything. Obviously this might not even be an option for you so probably completely useless sorry. Anyway just wanted to let you know you are not alone and reading your post helped me not feel alone so thankyou.

I have found telling close friends or family how I’m feeling really helpful letting it all out. I have also found little things like eating and drinking healthy helps me mentally. Things like green tea for example which is suppose to be good for my brain inflammation helps me mentally. Just the thought that little things like that might be helping is probably stronger than what it actually does.

Be kind to yourself and I hope you get some more helpful advice than this lol.

Hi @Andy1988
Having vision problems really sucks doesn’t it…

Sometimes with ON they will give a short high-dose course of steroids, but I think they have to be given fairly quickly after onset to make any difference, I don’t know how long ago you started having problems with this. You can read more about it here.

Otherwise I’m afraid it’s a case of being patient and waiting for it to resolve on it’s own. Not what you wanted to hear I know.

My vision problems were the other way around, I had ON first and then double vision (which I still have 6 years on). There doesn’t seem to be any rhyme or reason why these things happen. The vagaries of the MonSter I guess.

I hope it resolves soon for you!

Hi both,

Thanks for your replies. It’s good to hear other points of view as you realise you aren’t alone in your thoughts. I’ve read a lot about most people making a full recovery from ON but it’s the wait and unknown that is the hardest, isn’t it! It’s strange how your brain works at times, every ache and pain becomes “a sign that your MS is worsening,” when reality it is probably just life happening and getting older.

I’ve got a great support network of friends and family, but it’s also great to use forums like this and connect with others in a similar boat. Thanks for your support and hope you both are well.

I agree with the idea of running on a treadmill, I’ll give that a go more over half term (I’m a teacher) when I can get down to the gym easier. My main symptom when running is feeling like my eyes are finding it difficult to focus and it’s almost like they are in a tumble dryer and it takes 5 mins when I’ve stopped to readjust. :crossed_fingers:t3: For the best though.

Take care

Andy

Hi Andy, Before I had stem cell treatment in Mexico I was having trouble with blurred vision and different issues with my eyes. I didn’t realize how bad my eyes were until I got to Mexico and they explained to me if I hadn’t have gotten the treatment I could’ve been blind within a couple months. since my treatment three years ago my eyes are fine and the progression has stopped on my MS that was attacking my optical nerves. I don’t know if the treatment I had is something that you may be interested in learning about but I will be glad to share if you need me too.

Hi Andy, I also had ON as my first symptom. I had it in one eye then that resolved (after maybe two weeks) then got it in the other a few months later (again it resolved after a few weeks), then got it in the first again. Basically I found it hard to read as the contrast between the white page and the black letters was gone. I also had weird symptoms where I couldn’t focus but thankfully these lasted only maybe 30 minutes and I could just sit down and let these symptoms pass. I agree with you re gym…it was definitely worse when I was running (or got hot in any way really)… apparently your optic nerves, which the ON damages, can no longer carry as much blood so if you get hot this causes a problem (like a small diameter pipe with too much water trying to get through it).
As one of the other posters mentioned, steroids definitely helped A LOT, and basically ended the attack (query maybe it would have ended anyway?), but some damage remained. My understanding is steroids can shorten an attack but not repair damage already done.
Since then I take cod liver oil supplements (or try to eats lost of fish!) which are apparently anti-inflammatory. Althogh these things seems to help me to some greater or lesser extent, since being diagnosed (because I got something called L’Hemitte’s Sign), I’ve learnt that everyone’s disease is different. So whilst I’m writing here what seems to have helped me, maybe it’s just a coincidence. But when I was diagnosed I was grateful for these sorts of bits of info. I’m definitely not saying they’re cures or anything, so have realistic expectations. MS is such a difficult monster to tackle. Good luck. Check out Vitamin D too…that (or a lack of it; this does seem to have some link with MS) …all very weird!
Charlie