I never thought I'd do a poll and it may be a silly one but I read a post that made me wonder a couple of things. I have always been very light sensitive.
My eye doctor had a difficult time checking my eyes because of light sensitivity. When I started my first bout of ON my sensitivity increased. It was so bad I was wearing sunglasses in the house even at night. As the ON subsided I found my light sensitivity did too.
There are signs that I have had ON in my left eye now. At this point I can tolerate light with little trouble. In fact I can have my eyes checked and the eye doctors light in my eye with out blinking.
The doctor says it makes his job easier but it is not a good thing because it means bad things about my vision.
Anyway I am curious about those with a dx of MS and those with ON.
When I first had vertigo in 1999 I was very light sensitive and remained so until a few years ago. Since then I have become less and less light sensitive.
In 2008 I had OCT which showed I had had assymptomatic ON bilaterally - left worse than right. So I had ON at some point and did not know it.
My neuro never believed that my vertigo was just peripheral like Dr. Epley said and had plenty of evidence for. Dr. Epley believed it was autoimmune, but peripheral. Dr. M believed (though wouldn't actually say) that the vertigo was actually more likely to have been my first problem with MS.
My sensitivity to light has continued to get worse over the last year but I have cataracts which were only discovered 6 mo. ago when i went to an opthalmoligist..geez, i get tired of these long words..and now i am ready for surgery next month on my right eye...
I dont understand anything and it gets harder all the time..lol
What does the vertigo have to do with it? I first big sign of a problem started 6-7 years ago with vertigo. Although there have been others too but nothing that would shake my world.
I have MS and have had ON. I can't say about the light sensitivity because I think I've always had sensitive eyes due to them being light blue. Out in the sunlight, they will water terribly and I'll be nearly blinded by it at times.
Being altogether undx, I didn't vote, so as not to skew your results. However, I will express a thought ot two.
My biggest vision problem through this whole saga has been a vague are in the upper right of my field of view that seems different from the rest of the scene, whatever that scene may be. I have most often described this area as similar to the ghostly shapes one sees after having been the subject of a flash photo. It's there, but it's not there. Sometimes it's a haze or fog, but it never really obscures whatever happens to be behind it; it just makes it less distinct. Field-of-view tests score as normal. Sometimes there is less color intensity in that area.
I have definitely noticed that this phenomenon is worse when my environment includes a broad range of light-to-dark areas, like now when I am sitting at my desk with only natural light filtering in, no lamps or other lights turned on, and there is bright sunshine outside.
I have a problem in very low light conditions, because I simply can't balance well at all without visual input. (Well, I can't WITH visual input either, but it's worse without it!)
Bright light can make me blink a lot, but I need bright light to read printed materials, unless they are in very large print. I've found, over recent years, that sunglasses are more important to me than they used to be for comfort's sake, but the eye doc I recently saw said that most of my problems with things like that are simply because my eyes are aging. I'm scheduled to go back to see that 31-year-old on Tuesday, when my new glasses are supposed to be ready.
This Friday, I am supposed to see the neuro-ophthalmologist again, who has been the most helpful doc I've seen. He prescribed Neurontin for my nasty eye pain, which has helped significantly, as I've described here at some length previously. I also have some double vision, and when this was troubling me more recently, neuro #4 advised me to go back to the neuro-ophtho professor, possibly because he doesn't know what else to do, since my tests are all at or near normal.
Don't know if any of this makes any sense or has any usefulness, but there it is.
ON was a symptom that I had about 1 1/2 years before dx. Any flash of light into my eyes would bring on a temporary partial blindness, such as glare from another cars window while driving. It was an insult to my brain. I don't know how else to explain it.
Lights bothered me for about a year later. Even flashing Christmas lights were bothersome. Now, I can go out without sunglasses.
This Halloween, one of my grand babies pointed a portable strobe light at me. It stunned me. It's difficult to explain. I've heard about people who can have a seizure induced by flashing lights. The police departments are investigating using lights that will incapacitate people - a flashing and pulsating light that will take people down.
Geez, I think a simple Halloween toy flashing light could take me down.
Pastor Dan- Makes me wonder if they will find ON. Sounds a lot like it.
I was just curious about every one's experience. I have light blue eyes myself and have always worn dark sunglasses. My eye doctor has never been able to get a complete eye exam done on me because of my light sensitivity.
When I have an active case of ON I am very sensitive to the light. Just recently my left eye was having problems and it is now showing on my vision field test. But things have settled back down for the most part.
I can not tolerate over headlights or fluorescent. They distort my vision. I have been banned from driving at night because of the problem I am having with losing my vision after having a bright light in my eyes. Those headlights are awful! Plus my reaction time is the pitts.
I have damage to my optic nerve and I wonder if that is why I am more tolerant of light now.
My aunt lost most of her vision and with me losing light sensitivity I am concerned. My eye doctor said I am losing visual acuity so I am sure the lose of light sensitivity makes sense.
This double vision is ridiculous!! I know MS affects everyone differently. Seems to be my eyes and legs.
In addition to my several other strands of background, I am a building safety and fire prevention professional. We've long been aware that strobe lights of a certain frequency are known to trigger seizures in epileptic persons. Consequently, the strobe lights in fire alarm systems, put there to alert the profoundly hearing-impaired, must be set to a certain (slow) frequency (although at the moment I cannot recall what that speed is; possibly 1 Hz or less).
LA, my VEP was said to be normal, but I would really feel better if I could have one done at a diffeent lab. The same place botched the SSEP done at the same visit, rendering it somehow "unable to be interpreted."
I will pray that you are not going blind, but know this: if you do, there are far more helps out there today for those with visual impairments than existed only a few years ago.
Heather, I don't have MS either, according to several neuros, but according to the latest one and the neuro-ophthalmologist, I might, maybe. The several also suggested (no, one of them insisted) that I have migraine aura with no headache. No migraine meds have helped, though. The two who think I might possibly have MS also agree that I could just as easily have migraine aura with no headache. Well, not sure how any of that helps answer LATW's question, but I didn't want to leave anyone with the impression that my issues had been traced to MS, ON, or anything else, with any level of certainty.
It was simple, really, the fiftieth migraine med didn't work!!!! I've been on everything I swear! Topamax, beta blockers, blah, blah, blah! I started five years ago on different things. I finally have a neuro that doesn't think I'm crazy, but he doesn't think I have MS, and ironically he seems to have looked for it and I didn't mention it. ever. Some day you and I, I am convinced will be dx with the same thing....
Going blind is one of my biggest fears. Do you believe you are having repeated bouts of Optic Neuritis? I have used SoluMedrol once, and that was to take advantage of any protection SoluMedrol could offer to my eyes. Yes, I know it is said that the outcome is no different with or without steroids, but I don't entirely believe that. (just my not so popular opinion). Ask your neurologist/neuro-opto what he or she thinks.
For myself, I use supplements and foods that are anti-inflammatory with the hope some will make their way into the brain and calm the attack on myelin. Pineapple and papaya are good for starters. Tumeric is also good. If you decide to try some supplements, use food based gel capsules whenever possible. Use moderation and ask your neuro before trying them out.
I still have a pale optic nerve and did lose some visual acquity in the eye that was involved with ON. Later came double vision that lasted several months. When the DV cleared I could not read as the page was full of blank spots and distorted lines. It took almost a year for visual disturbances to clear but they finally did. Now I have slight blurriness with I am tired.
Do what you can to protect your vision, even if it's unconventional. I choose supplements or foods that can do no harm, with the hope it can do some good. Turmeric is a good example. People in India eat a lot of this spice. Few have MS. That could be due to where they live, or who knows? Maybe turmeric is protective in some fashion.
There is a fear there of totally losing my vision. I have had two bouts of ON in my right eye and it is very likely I had one in my left eye because of what my vision field test results. No steriod treatments though. I even went to the ER after total loss of vision in both eyes. It did come back to my new "normal" after a few days.
I was just curious to know what changes others have had with their vision. I tolerate the doctors exam without much trouble but overhead lights are awful. Light from outside is a problem too.
Well at least my eye exams are easier!
Karen99--Thank you for the helpful suggestions!
Pastor Dan and wadeheather -- I hope you find an answer soon. My VEP was abnormal and so was my MRI. It has to be very frustrating to continue coming up with no answer. :(
I didn't vote cause I don't have a firm diagnosis. I have noticed increased light sensitivity over the past 6-12 months. It used to be I could get used to brighter lights gradually. Not so much anymore. Florescent light and computer work always cause an increase in blurry vision.
I had an abnormal VEP for the right eye but my only problem with a specific blind spot occurred when the ophthalmologist diagnosed a clot related to the left eye. So the neuro disregarded her own interpretation of the VEP because I couldn't remember any other specific visual difficulties involving the right eye. NEVER mentioned asymptomatic ON existed.
I've also noticed that I can't track moving objects, or ride in the car very long without getting eye fatigue, dizziness,nausea, headache and (sometimes) eye pain. If I sit in a darkened room with my eyes closed for a little while in all clears.
I'm not due to see the ophthalmologist until 12/2010. I think I might call and see about an exam much sooner.
I haven't voted as I can't fit my answer in so here is my summary:
I had ON dx 20 years ago when I lost my sight completely in my left eye.
I had ON dx 5 years ago in the same eye and was given a possible MS dx.
I had a positive VEP for my left eye last year.
I had a dx of RRMS earlier this year.
My light sensitivity is frustrating and very acute. I wear sunglasses in the house. It seems I may have had ON in the right eye too at some point. The optho feels that I also now have convergence disorder due to weak muscles around my eyes which is adding to my double vision problem.
The light sensitivity is not dependent on my dx but on if I am having a bad day, under stress, feeling poorly, over-heated, fatigued, you name it!!!
So sorry I couldn't do the vote but my eye issues are quite intense and a constant battle, I also fear any worsening of eye symptoms, but they, like the rest of you, I also fear most of the more debilitating sx.
Great discussion, I hope this is of interest to you.
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