Hi Everyone, Hope you are all having a good weekend. I am recently diagnosed with RRMS, it’s all quite new to me and feeling a bit in the dark, so seeking a bit of advice. Since yesterday my left eye has been painful when I look upwards, also feels quite achey and stiff. Fortunately m my vision is fine, so it could be worse. Over the past 18 months I have had one episode of Optic Neuritis and one period of double vision. I know I have an MS nurse as a contact. My diagnosis was in Oct 19 and I haven’t seen anyone yet. I don’t want to be a bother but is this the kind of thing they could help with? Also realise it may not be Optic Neuritis, and I may be overreacting. As it is a weekend, I imagine I should wait a few days, anyway? I have been prescribed steroids in the past for eye problem. Not sure how steroids work but is it the case that it is better to have them sooner ather than later? Really appreciate any replies to my rambling questions. Thank you
Hi, I’m not diagnosed but my vision went for the second time in two years over Christmas. The opthmalogist said I should have seen them within 24 hours, no later than 48 hours to aid recovery. I still can’t see very well so wish I’d been more pushy to get a doctor’s appointment rather than waiting almost four weeks. I’d ask your ms nurse for advise and if your vision starts to go, the advice i was given was seek medical attention asap so they can give me drugs to help.
Thank you, that is a huge help. Sorry to hear about your vision problems, hope it improves. X
Hi Dizzee, I’ve just had Optic neuritis, my main issues in left eye were pain, particularly looking up and down, gritty dry sore eye and colour loss. The hospital tested me for damage but I was lucky in that my actual vision is fine but I still have colour loss but only red now, which appears washed out still. It’s been about 12 weeks now since. They told me I only needed steroids if the vision actually went and to go straight in, but luckily it’s just color loss in that eye. I have yet to be diagnosed with MS and more tests follow shortly. Regards Abs x
Hi Abs, Many thanks for your reply, that is really helpful. I really hope your full colour vision returns soon. Also hope you’re not waiting too long for your upcoming tests. X
Hi way back in 2000 i lost vision in one eye on holiday, then at home, and the doctor ignored it. I kid you not, said it was the heat where i had been nothing to worry about, and each episode soon sorted.
over the following years i had pain in my eye, and double vision. I didnt use google then maybe i should have lol.
in 2006 when i couldnt get out of bed the new doctor took me seriously and it was my journey with MS.
In 2008 i had a VEP test which was positive bilaterally for ON. left being worse.
I have had several attacks since but never been seen urgently.
fast forward to 2020. I had another VEP test in 2015 october which showed i again had POSITIVE ON, and more slowing of vision and brain and it got my diagnosis.
my vision i have lost some colour perception, when i choose paint for my walls i tell my daughter what i want and she lets me know which is the right colour. I have worn odd socks ha ha, kind of red pink or orange.
I have had awful gritty eyes, mine comes on with heat and stress. BUT weirdly enough my vision is still good.
well with glasses.
I now have blepheritis which has caused ingrowing eyelashes which hurt like the devil.
what i am trying to say is, i have had it years and can still see, but if i had known earlier on what it was i would have insisted on being seen. my MS nurse told me a few years back i was having an attack of ON which my doctor missed and i could have had steroids but i didnt. at the time its was vague, it starts with side vision going, weird stuff in my vision, and bright lights i cant see at all. i havent had the same pain as i did at the beginning. the side vision loss is bizarre. but thankfully so far it has sorted itself out.
dont leave it too long ok. xxx
Morning Crazy Chick, Thank you so much for your reply. Sounds like you have really been through it and I am glad it is sorting itself out. Xxx I will speaknwith my MS nurse tomorrow. The pain is easing a bit, but I suppose it is better to be a pain in the bum than ignore another potential flare up. Think I am still in the learning phase,if that makes sense,my diagnosis doesn’t feel real. I imagine the professionals understand this, just didn’t want to waste their time if I am overreacting. My previous eye issues resulted in vision issues, so the pain is a new thing. Really appreciate you reply, thank you.xxx
Hi Dizzee. Fortunatley I haven’t had issues with loosing my eye sight or double vision but I do have pressure behind my eyes and sometimes they feel really itchy and dry.
I get really sore eyes about once a month. Can last a few hours or several days. Doesn’t affect my vision just really painful and makes me cross. I take Codeine and ibuprofen until it goes
Hi Min and Deb, Thank you so much for your replies, it is really helpful. Think I was jumping the gun as the pain has definitely reduced over the past couple of days. However, every now and then this crops up so good to know I am not alone with this. I had an appointment come through with my MS nurse for next week, so will mention it then. Hope you both have a good weekend. Xx