Hello,
6 months ago I had a bout of ON, and I’m not yet diagnosed with MS but feels like it’s imminent now. I am aware that there are some subjective components of vision such as color perception and contrast perception which often are not fully recovered after ON. I have these problems but the thing that bothers me most is that my vision changes throughout a day. It’s usually pretty worse in the daytime and gets much better in the evening closer to bedtime. Sometimes it’s even close to what I have in my unaffected eye (though never the same). I don’t quite understand why this is happening and my neurologist can’t really explain this phenomenal to me. I can’t also find information about this on the Internet.
I’d like to ask this community whether there are any people here who experienced this before or are struggling with now? Do you know why this is happening? Based on your experience can I expect that it will get better eventually and my vision will stabile on what I’m having in the evening?
Thank you for your help,
Dmitri
Hello Dmitri, I was diagnosed about 10 yrs ago, my first symptoms were visual although it was never the classic symptoms of ON. Over the years Ive had many episodes of worsening ON . In my case it affects both eyes. the vision never goes away altogether and it definitely worsens throughout the day, when i get tired, hot or stressed. I have days when I hardly notice it at all, and days which its with me as soon as I get up. The optic nerve always looks normal as my lesion is far back along the optic tract, In my case its both eyes which are affected. because the lesion is on the optic chiasm which is llike the signal box to the brain.
I have to avoid busy places/heat.stress/luminious colours. sometimes even hot meals will bring it on. I also have a visual scotoma which gives me little holes in my vision , like looking through a watery blob. . My neurologist says the lesions on the MRI scan would explain my symptoms, but everyone manifests them a bit differently. Its a bit lonley though when you look so normal and can kind of see but kind of cant. im sure people have thought Im mad over the years trying to explain it.
I think mine is permanent now, but I know that after a relapse of ON . ones sight can still recover 9-12 months after a relapse, and some people never get another one.
Ive learnt to live with it, I still drive, and Ive stopped trying to explain it now. It just kind of lives with me,
I remember reading about ‘urthoffs syndrome’ in the beginning and it made sense to me… It helped to be referred to a neuro opthalmologist who eventually explained it all to me, and my ms journey changed once i had been diagnosed and was referred to a consultant who specialised in ms.
really good luck to you,
Carolyn