Permanent bad eyesight!!!

I am completely new to this site but I have been clicking around and haven't found anything on optic nerve damage.  I have had several episodes of optic neuritis and with each episode my vision got worse and has never completely returned.  I am blind in one eye and the other has minimum clarity.  Now it is considered optic atrophy!  Does anyone else have this and any suggestions to help?  Everything I have read says there is NOTHING that can be done!!  I am a huge advocate for stem cell research for this very reason!

[doublevision1]

I'm sorry to hear about your ON.  I do not know much about this, but there are others here who do.  My vision problems are limited to double vision which is actually a movement disorder, my vision itself is ok.  Have you been seen by a neuro-ophthalmologist and if so, what did they tell you?

db1

ps:  I agree with you in a big way, yes to stem cell research!

[jensequitur]

I've heard that IV steroids are better at preventing future optic neuritis episodes than the oral steroid...  I've only taken the oral, and I have some problems with my right eye (double/blurred vision, color changes, etc.)   When I want to see something, I cover my right eye and look out of my left.  Everything out of the right eye is blurred and flat-looking.

And I'm right there with you...  I've been looking, but haven't found anything that would help my vision.  It fluctuates - when I'm feeling bad, it's worse, and when I'm in remission, it's better.

[santana8]

Two years ago I was standing in the store when all of a sudden my vision became very confused. The eye doctors could not find anything wrong. I had and still have 20/20/ vision. My optic nerve, retina, and eye movements are all normal. They finally done a visual field test and found that I have a inferior( bottom) harmoneous( both sides of the vision field) quadrant( 1/4 of the vision field) defect. The vision field has four  parts. The upper two are superior fields, the lower two are inferior fields. My defect is like looking at a square hape with the bottom right corner missing. That how everything I look at  looks to me. I am able to see the  whole object or scene only by scanning.

After they found this defect they finally got me to the neurologist. That's when the MRI showed multiple lesions in the white matter. I am currentely stuck between two dx's, ADEM and MS. I have been scanned every six months for two years. The MRI's have shown no change in the lesions, no new lesions and no enhancement. MY dx is likely to remain ADEM unless there are changes on  MRI or another attack.

Now , my opthalmologist and neurologist say that there is no evidence that I had optic neuritis because my optic nerves are normal, but if I did it was further back on the optic nerve  in the visual pathways toward the brain. This form is called Retoubular Neuritis. IT has the same symptoms as ON, infact it is another form of ON. It cannot been seen by fundiscopic exam.

I didn't get any steriods because by the time they finally figured out that I wasn't making it up the acute stage had already past and the steriods wouldn't help at this point. This is what I have read about steriods and also what my doctors have told me. Steriods do not change the visual prognosis and that it only speeds up recovery time. I have improved without any meds at all over the last two years. It probally would have been about six months had I received the steriods. The oral steriods are strongly contridicted because of they have been associated with higher chance a relapes.

Hopes this helps  some.

Santana

[Deb61]

I am very sorry you're going through this . . .  I don't know if this may help or not, but thought I'd throw that out to you to investigate . . .A person I've work with is going through a similar experience after experiencing ON last year.  Some of her visual problems is also related to the cataracs (and something about the pupil not closing, too--didn't understand) that she developed after she had steroid drops in her eyes.  She's going to be having surgery on her eyes soon to help correct this problem.

Welcome, by the way!  I'm glad you found this forum.

Sweetie, take care.  I pray that you find some answers.
Deb