[Dufferooni]

Hi everyone,

So I was unsure where to put this, as I haven't been diagnosed with MS, just had a rather nasty bout of ON. If this is in the incorrect place, I do apologise and I'll remove or move it as necessary.

So late last year, around the middle of December, I started getting severe pain behind and around my eyes. I was unsure of what to do, so I left it alone for a day or so but then the pain became intolerable, and I went to my local GP. She suggested that it could be a sinus condition as I'd been having some pretty severe sinus-y things happening over the previous two years. She handed me some antibiotics, patted me on the shoulder and off I went.

A week later, I started to lose vision. Something really wasn't right, so I called the doctor and she advised me to seek out an optometrist straight away. So I did, and he then referred me to an opthalmologist the very next day and he then sent me to the nearest major city and public hospital ASAP. By this point I was getting very, very frightened.

My vision was just blurry and the pain was AGONISING but they suggested I wait it out and hope that the ON cured itself, as it still had roughly two weeks to go before it was due to get better. The lady that I spoke to and who diagnosed me, said that it wasn't a particularly bad case and wouldn't need steroids. Three weeks later, I was admitted to the hospital with absolutely NO vision in my left eye and partial vision in my right. I could barely see to walk.

9 months later, I am vision impaired. I have roughly 85% I suppose, but it always feels... wrong. Alien, like my eye doesn't belong in my head. They couldn't find anything wrong in the billions of tests, MRIs and lumbar punctures, but I was placed on steroids for a lot longer period than usual to try and maximise my sight healing. The nerve itself is damaged and there's nothing I can do about that.

I've been dealing with stress and anxiety most of my life and the doctor's best guess was that my immune system finally caved in and attacked itself, leading to this happening. My life has been completely uprooted, I'm living in a one room apartment, I've gone from a full time, well paying job to unemployment.

I was just wondering how people cope with the loss of vision afterwards? How long it takes to fully get over something like this? If people have had similar things happen? Is there a chance of a relapse this far out? Any kind of help or anything would be much appreciated and welcomed.

[Snoopy]

Hi Dufferooni and welcome to NeuroTalk.

I know you have not been diagnosed with Multiple Sclerosis but many on the MS forum have dealt with Optic Neuritis (ON) and could be of help in answering your questions.

Multiple Sclerosis Forum: http://neurotalk.psychcentral.com/forum17.html

I have MS but I have never had ON.

My sister as well as 2 of my friends have had ON but do not have MS. My sister's ON cleared up on it's own in 3 weeks and she has never had another episode of ON.

I hope you were put on IV steroids? Oral steroids are not recommended for treating ON.

Anytime there is an issue with your vision please see an Optometrist or Ophthalmologist as Primary Care Physicians really are not very good at diagnosing vision problems. It is unfortunate that your Primary Care Physician did not refer you directly to an Ophthalmologist at your first visit

[Wiix]

YIKES!! That has to be scary. I had a stroke about 5 years ago and ever since have had a blurry right eye. Some days are better than others but on the whole it has improved to a degree. I have a lot of watering and when I wipe it away it's improved for a bit. I'm hoping it will improve. It really sucks not being able to see.

[Dufferooni]

Hi Snoopy

Ooohh ok, I'll post this over there then. Thank you!

Yeah, IV steroids for 3 days and then oral steroids for 3 months. :/

Well, it didn't originally present as loss of vision, just pain. Then a week after the pain started, the vision went and that's when the GP sent me to the optometrist. Actually, now I think back on it, I think she did send me to the Optometrist the same day as well but he couldn't find anything at the time either as my sight was perfectly ok at the time.

Hi Wiix

Yeah it really does. I have some eye drops I use that are for tired eyes that tend to kind of help it feel less... weird, but most of the time I feel like my eye just doesn't belong. That stroke sounds nasty, I really hope you're doing ok now?

[Wiix]

I think my stroke was cause by a med I was on. I tried to stop it by taking less and that's what caused it. Metropolol, a nasty drug for BP. Had me bleeding inside and pain, was tortuorous.

Well, aside from that. What do you plan to do about your eye? Sounds like you aren't having much luck.

[Dufferooni]

That's awful... are you doing better now and everything? Still on the same medication?


There's nothing I can really do about my eye, I don't think. Hence the questions and stuff for people who have had the ON and have had vision loss. I'd like to know if this is the same feeling they get, or if it's something I should be looking into. I've scheduled and optometrist appointment next week so maybe he can give me some advice as to how to manage it as well.