Hello all - I am usually on the MG forum, as I am techincally still in limboland and all But I have a question for yall - when I saw a neuro opthamologist, he told me that it looked like I had ON in the past in one of my eyes.. I would sometimes have some sensitivity to light with my eye or eyes, but never thought much about it.. never had an episode that I specifically remember - not one that brought me to a dr anyhow

The past 3 days I have been having pretty substantial pain in my right eye with blurry/changed vision in that eye too.. It feels like an ocular headache.. I used to get migraines that would hurt it felt like in the eye - lasting for hours.. but this has lasted 3 days now and it hurts when I move my eye too.. sensitive to light and all, but my eye doesn't appear any more red than normal from what I can tell... so anyhow.. I was curious what yalls ON usually feels like - does it cause a headache?? I plan on seeing the neuroopthamologist soon for all of this anways - maybe sooner than later if it keeps up!

Hello bny806 -

I am sorry you are in limbo and having eye pain.

For me, optic neuritis was a sharp pain in the R eye. It went away only if I kept the eye totally still. This is nearly impossible as the eyes work together so just patching the eye doesn't work. At times, all of my effort was finding a place to rest my vision where my eye did not hurt badly.

At the same time, I lost a small field of central vision- I measured in w a newspaper- 6 letters of news type.

The entire thing lasted approx. 6 weeks. I do not remember a separate headache.

Best to you,
ANN

If your eye pain is "substantial"...as in the worst you've ever had in your life. Call your doctor as immediately as you can. Optic neuritis can cause pain when you move your eyes, so you really should have that checked out. Call your doctor.

The first time I had optic neuritis. I would classify it as the worst headache I'd ever had in my life. I probably should have gone to the hospital that night when my head hurt so bad I thought I was dying, but I didnt. Woke up the next morning with a big blind spot in my left eye. It took about a year for that to clear up.

I've also had optic neuritis where it caused diplopia (double vision), but also gave me pain behind the eyes.

Last year around this time, my right eye started to hurt, but I didnt have any obvious vision problems. My eye hurt for about a month and a half before I started to have vision problems. That time I went to the eye doctor a week or two into the eye pain, and we'd decided to wait it out. So, after a month and a half of eye pain that would not go away, and then the vision weirdness moved in. I lost almost all vision in the right eye for about a month or two. (cant remember exactly how long that lasted). I ended up freaking out when I couldnt see. Pain, I could deal with, but not being able to see. Holy cow, I went running to my neuro and my eye doctor and they both got together and said I needed IV steroids. So, they called my regular doctor and got him to get the IV steroids set up for me.

I'm not sure why the neuro or the eye doctor couldnt do the prescribing last year. I think it's because when all the MS stuff first started, I made sure that my eye doctor, the neuro and my regular doctor all got copies of anything that I went to see one of the doctors for. So, I think they got used to getting together in a conference call or playing phone tag with each other so they all knew what the other guy might have been doing. I'm just glad they all play well together and help get things going.

When I was 1st diagnosed, they did tell me that I must of had ON at some point in my life. I did have a scotoma at that time and it took a while to go away. I still have trouble with my field of vision in my left eye.

I agree with Erin. If the pain is really bad, call your dr. as soon as you can. From what I understand, early treatment of ON can help prevent permanent vision loss.

Let us know how you are doing.

Thank yall so much!!! I really appreciate it - this whole limbo land thing is tough, as I just don't know what i'm dealing with.. I get IVIG treatments and they help but the drs seem perplexed by many of my symptoms - most recently I have realized hormones MAJORLY affect my symptoms - premenstral everything gets so much worse.... they are all stumped by this!?! heat of course makes me melt too..


anyhow, as far as the eye pain goes - it is much better, but no doubt still there - if I cough - the pressure of my eye causes much worse pain - is that common with ON?? it has become much more tolerable.. as far as I know I haven't had any new vision loss (from the visual field studies at the opth I do have visual field loss from previous ON).. I have so many dr's appointments it's hard to make more - ugh.. but I will be making another one here soon with opth too!

Erin- I can't imagine having so much loss of vision for a whole month!! how did you function?

I barely functioned. I hid in my room and tried to obsessively watch a tv show that I'm pretty much still obsessively watching. (BBC Sherlock. The fact that the main actor, Benedict Cumberbatch, has the most beautiful voice to listen to helped.). That show helped a lot with distracting me from being sick from the optic neuritis. It's probably why I still really love it. I'm waiting for the 3rd season to get filmed so I can find out what happened with the cliffhanger from the second season. (weird thing about some British shows...their seasons arent as long as tv shows filmed in America. There's two seasons of BBC Sherlock, but only SIX episodes...seven if you include the pilot episode that never got aired. An episode is an hour and a half long tho. So, they're like a series of movies)

For other things to keep myself occupied, I learned how to make my iPad read out loud to me, and used my Kindle's text-to-speech function to read to me also. I "read" a lot with my Kindle and my iPad.

you asked about when you cough, it makes your eye hurt. Yeah, I experienced that too. I had allergies last year at the same time I had some of the eye pain from the optic neuritis. Every time I sneezed, I went "OWWWWWWWW!!!...that just sucked. I think it's because when you cough or sneeze, you reflexively scrunch your eyes up with a sneeze or cough, which makes you move your eyes. I dont think it's pressure. It's just the fact that your moving your eyes and the optic neuritis is making moving your eyes painful. Just sucks. I hate optic neuritis.

Thanks so much Erin! I am still having the pain, though I think it is better.. it's really strange as it is best in the morning and gradually worsens the more i'm up and about.. I wonder if that's due to me moving my eye more when I'm up and about my day or what!!? is that normal for ON?

I worry sometimes as my vision seems "odd" since all of my neuro symptoms started - they found I had visual field loss, but looking at the computer screen sometimes is when it's most noticable.... I agree.. no fun at all!!! I never realized how much I move my eye during a day!

Gosh

I don't remember much pain - other than thinking I might have had conjunctivitis. My eyes were red and sore, and there was quite a bit of discomfort.

Then came the blurring, then loss of colour and then loss of field of vision. If I walked down a supermarket aisle, I was aware of products but couldn't see labels, I had huge 'holes' where there was nothing, everything was greyed out (no colour), signs/text/pictues bounced around everywhere, if I looked to my left, I was unaware of anything being on my right.

My reflection was a big double fuzzy mess (no fun at all putting on make-up - though I didn't much care at that point)

I hope this gets better for you really soon. I remember so clearly the first minute I realised my vision was starting to clear - it was so exciting - at that stage, I still didn't know exactly why it had gone in the first place.

Best wishes for a speedy recovery

Lyn

xx

Maybe your eyes are more relaxed when you're asleep, so they dont hurt as much then? Did you go see your eye doctor???

I dont know if I have any visual field loss right now. It's been about a year since they stuck me in front of the visual field detector or whatever they call that thing that maps it out.

I'm sitting here terrified that I'm about to have some sort of MS flare. I spent about 3 or 4 days this week with a weird fever. I felt bad, but never got throwing up sick. Just was hot and felt yucky. Fever topped out at around 103F. I could tell it was making some of my symptoms all screwy. I'm just terrified that I'll have some weird neurological crap happening soon. It was a weird couple of days. The last day the fever went away, then came back, and then went away and I spent about half that last day with a lower-than-my-normal-temperature temperature. (about 96.7F-97.3F. My normal temp seems to be 98.4F) It was really weird. Then the next morning, my temp went back to normal. I dont know if I've ever had a virus that only seemed to give me a fever and maybe an occasional stomach pain, but didnt make me throw up.

MS is such an annoying thing. I dont like it when I have to worry about colds and viruses and then be scared that it's going to trigger some new and really annoying symptom. I'm walking weird right now tho. Hope I'm not getting foot drop in my other foot.


Hope your eye stops hurting really really soon. I hate eye pain, because it feels like you cant get away from it. If it gets really bad, you can ask your doctor for a pain med. I got to the point that I asked for some. Pain med didnt help me, but mine was really really painful. I got desperate and asked the neuro if steroids would help. Only thing that stopped the pain was the IV steroids lowering the inflammation.

Thank yall so much!!! I can't appreciate much obvious vision loss - but can tell my vision is worse.. I think i might have a little bit of a blur on one spot that may be new - as I've told the dr's all along - my vision is just off.. sometimes double/ghosting, other times just weird.. not normal!

Erin - Even though they don't know what I Have I know what you mean - I have 2 small kiddos so we are always passing around illnesses.. and I"m always so scared when I get them, as I just don't know how my body will handle it.. many times it exacerbates my symptoms - I'll get these crazy shocks and I won't know what or where will be affected if something does.. sometimes it feels like my tongue and mouth go totally numb.. and well heat - that just makes me melt! it's so odd!

I haven't gone to the dr yet.. we have had so much going on.. I need to, I'm going to try to get in next week.. I'm so tired of dr's appointments, i have a hard time making apts and going anymore!