I had ON twice back in 2002 2 months apart, it's how I presented and was dxd. I haven't had it since, but I will never forget it. It was like looking through a really, Really foggy window. It all started w/ pain behind my right eye, I kinda thought nothing about it. I didn't know I had ms yet. Two days later, my vision started going, it was 1/3 gone starting from the bottom. The 2nd day it was 2/3 gone and I got to the hospital. By the third day, my whole eye was enveloped. There was no redness around the eye. I could see motion and light only. I could not really differentiate color.

It is common for the normal population to have eye flutters. It is know as Myokymia. It can affect various parts of the body and is basically involuntary muscle spasm. It can be brought on by too much caffeine, fatigue, anxiety, exertion, stress, and a lack of sleep. It may or may not be an ms "symptom", it may be secondary to one of these factors. My sister had that for three weeks before her wedding due to stress, she doesn't have ms. I have had it here and there, although alot more mildly than you describe. No forced closing of the eyelids, just a twitch.

Anytime that you have blurry vision, it is a mandatory to get to an opthamologist, preferably in a hurry. Especially if you wouldn't recognize ON. And inform your neuro def. Maybe inform neuro first actually. Especially if you're on Tysabri. Opinions on an internet thread are not substitute for a doctors knowledge. Gl and let us know...;)

I would agree...get to the doctor. Eye doctor. I am lucky, I have an opthoneurologist, so I can get it all in one visit when need be, but you really should get this looked at as soon as possible. You know that there is always the danger of assuming something is MS and letting something get out of hand.

Good Luck, hope you are feeling better and have an answer real soon, and let us know.

Could this be conjuctivitis, the symptoms that you are suffering sound very much like that condition, but the only way you are gonna find out for sure is a trip tot the Dr or eye Dr. You got no option reallyy, hope everything works out.

Go to a GOOD optomalogist & don't be aftaid to change your general doctor if you don't get help. I was too stubborn til my 4th child. Good luck honey.

When I originally was diagnosed with MS, I also first presented with ON. I was diagnosed back in 2001 and suffered ON 4 times in the following 3 years. I was lucky (heavy sarcasm) to have BI_LATERAL ON which is rarer. Definitely go to the doctor. Don't assume that it's nothing.

Go to a good ophthalmologist. They will know if it is ON and will refer the tests to see if you have MS. ON is a very common first symptom of MS. I had it in 1982 and then my vision turned back 100% and I didn't have MS problems for another 16 years, so it is important to get a dx to get steroids if necess to heal faster. I got steroid eye drops back in 1982 and haven't had ON ever again. Good luck!

Thank you all for your response. I am going to the Dr tomorrow & can probably get into the optometrist in the afternoon if that is needed. I couldnt get in today as I was at work & the trains are not reliable in the heat - we got to 44'c which is very hot today.

Pressed add before meant to (oops), My right eye has been sore today & when I was waiting in the heat my left eye was giving me a lot of pain. It has settled once I am cooling down but right eye is still feeling like it is burning too. My Dr is very good & I am sure she will look at it & order investigations if needed.
Will keep you updated. Thanks again

My first episode of MS involved sever optic neuritis though I didn't know the name back then... That was 1986... I was finally diagnosed with MS in 1993 with ON plus all kinds of problems which were all MS related (balance, walking, all motor movements really). I've had MS for over 23 years, and one important thing I've learned is you ONLY get one set of eyes!!! Even when I can't afford to go to my Opthomologist, I DO... It is soooooo important to have a great eye doctor (my preference is an Optho as the exam seems to be more thorough) working in conjunction with your neuro when you feel it is necessary for them to consult one another!

My best advice it to get an entire team working for you and your health. Even my MS nurse is a big part of my team! (She also has MS and is in a scooter so I feel complete kinship to her and she to me!)

Good luck!!! xoxoxo Cj (Cindyjo)

Sounds like optic neuritis which is exactly what I had fve years ago pain and all

Thanks everyone. I went to my Dr this morning & she had a look at my eyes, said she cant see inflammation but that it needs to be checked out. she got the nurse to phone around eye specialists to get me an urgent appt & I have one at 12.15 tomorrow which is good.
She had also told me off for driving there LOL. It was 36'c so I wasnt going to go on scooter & be in heat longer.
Didnt tell her I still have speech therapist this afternoon mainly for swallowing problems. It is only 10 mins away & I could re do an appt but been waiting now awhile so will go in.
I think the rest of my body is giving out in sympathy or pseudo thing cause of heat - yesterday was 44'c & only got down to 32'c overnight - very hot!
Will update when I know more but really hoping not on but if it is at least I will know & hope they can help.
Thanks everyone, it means a lot for people to care & respond

Glad you are getting help, and all the best.

I went to eye specialist today & saw the assistant (I presume) who did a range of tests & put the drops in. Then I waited 15mins in waiting room & saw the actual specialist. His first question is what is your normal eyesight like? I tried to explain & he kept interrupting saying I dont want to know what you use glasses for I need to know what your normal sight is to work out what is wrong. What the ##@@**.
He didnt tell me anything new, yes I have dry eyes & may have optical neuritis. He couldnt give me any answers as he didnt have previous records. what a woft! He is definately a waste of space. Told me to phone neurologist & get seen this week - hello, its already Wednesday. Then he gave me a piece of paper & told me to see the receptionist. She said that will be $98 thanks & we want payment today then you can claim from medicare. I refused & said I only got the appt yesterday & had no idea what the cost would be & dont get paid till tomorrow so took the bill away.

I came home & rang the neurologist at Monash (the closer hospital), couldnt talk to him, only receptionist who said I could get in next Thursday but wouldnt get treatment if needed till probably the following week as it is always booked out.

I rang Royal melblourne neurology (who I was going to but they referred me back to monash for tests etc) & got ans machine saying clinic only open mon, thurs & fri. i rang another number I had & spoke to one of the nurses who took my details but said probably best to call in the morning or if real pain go to casualty. 5 mins later my mobile went & I grabbed it & it was her calling back, the registrar had popped his head into her office so she asked him about me. I was given 2 choices, either go to casualty tonight & they would (eventually) call the neuro registrar to see me. 2 - to go in tomorrow at 11am & the registrar will assess me & if it is optic neuritis will start methylprednisolone that day in the day area. Then organise hopefully hospital in the home to come out for the next 2 days treatment. I am going in tomorrow morning.

I am very pleased with the treatment & options given to me by royal Melb hospital & hope that they can work out what is wrong. If it isnt o.n. then what is it?

Will update when I can as dont know what tomorrow will bring - they better not admit me or I will go mad!

Thanks for reading

Wow what a terrible experience, with something so normal for MS.
I don't see that you could have done it any other way, but it could have been easier. The ON you had, had red eyes and that is not normally ON, so you had to get it checked by an opthomalogist or Optometrist first. Then the neuro orders steroids. Last two times I just called over the phone & didn't have to see the neurologist, I just called and told her nurse I have ON going on; with a typical ON presentation. The doc just ordered steroids over the phone. The first time there wasn't even an appointment after the steroids, the second time the steroids were ordered over the phone and a follow up appointment was scheduled 6 weeks later.

You sure got the run around an a simple ON exasberation. But I don't see that there was any other way for YOU to have handled it. You really did need to see an ophthalmologist & you really do to do some steroids. Happy insomnia!

I went into Royal melb hospital & saw the neuro registrar & he was good, did all sorts of eye tests & said def something wrong & optic neuritis. had 1st dose of methyl pred straight away, go back in tomorrow & Monday for next 2.

Nurse changed neuro appt from end feb to feb 5 so that he can review me quicker. has kept other appt incase he orders tests & wants to see me again, easier to cancel it if not needed than try to fit in again.

The set up where they do the methylpred is very good, I actually knew the nurse from previous drug trial. Interesting side line, they do tysabri infusions there so was listening to 3 that were having it & their opinions etc. All were happy, one was 8 months, one was only 2nd & not sure of other one. Definately gave me food for thought there too.

Had a bot of shakes after but that settled when I had a cake with icing & cappuchino with 1 sugar, just tired after. Was impressed with the registrar who saw me & he explained how he decides to do methylred or not & he said if it is affecting sight or mobility & could see eye issues so ordered it.

Thanks for support & advice