Janet, along with your symptom in the other tread, could you be in
a flare? Sure sounds like it. Get thee to the ER or Doc's ASAP.

I had ON for 8 years and then suddenly it corrected completely. It started, as many describe here, with pain, especially on moving the eye, and double vision. I looked out the window and everything was double. Then I developed a blind spot in the middle of my eye, just as others here. The blind spot would worsen and get somewhat better over the course of eight years. I could not watch TV without Pain, and wore a patch when out in bright light. It started on a day which was hot and sunny, with me out in the sun (never do that any more without covering up).
That was on Maui that it started, and the doctor there said there was nothing wrong with my eye even though I had double vision and a blind spot. I cried in his office, because it had been decades of symptoms without a diagnosis. I still don't know why he could not see what I had.
Back in Seattle I saw a doctor who could see something wrong but was not sure it was ON. He sent me to a neuro-opthalmologist for MS people, who said that taking steroids was not his usual protocol, because research showed that steroids did not hasten healing.
So I lived with it. I developed a drooping eyelid, very bad, but this went away too when I recovered.
I will never understand why it is hard for doctors to see these things which obviously exist, and which they can even take pictures of (the drooping lid). He took a pic of my face AFTER the lid droop went away and it was dramatic to see the difference. This was one of my experiences of doctors not being able to fully diagnose my situation.

I don't know if lid droop is ever a part of others' experience. It was not thought to be a stroke. I did have a number of lesions on my brain on MRI when that finally happened, when I was over fifty and had had symptoms since 17. My astrology said I could not easily be diagnosed in Seattle. I gave up astrology some time ago, as a pagan affect, but it was right about diagnosis for me. My life has been confusing, and that's one reason I find it interesting to read on this forum, to see that others, too, have had doctors who could not pinpoint their problems.

Later I was dxd with porphyria but I think I have a type of porphyria which sometimes develops MS signs and symptoms. Even later than this, some neuros said I had MS and some said I have porphyria. I think I have both, and tests ARE positive for porphyria. So I do the Swank diet and I avoid the Porphyria triggers and live with "both" and never go to neurologists now. And what that has to do with the "ON" I had for 8 years I'll never know.

"He sent me to a neuro-opthalmologist for MS people, who said that taking steroids was not his usual protocol, because research showed that steroids did not hasten healing."

That's interesting Mariel. Although I am under the impression that it helps to stop it from progressing if administered in the first few days.

With love, Erika

I'm not saying the neuro opthalmologist was correct, Erika. That was just what he thought from having read material on studies of the use of steroids for ON. I would not have been able to take the steroids which I've read are used for ON, such as Prednisone or that other one by IV, because I have Porphyria. But we didn't know I had it then. I could have taken Cortisone, which is OK for Porphyria, but I don't know if that's used for ON. I have had cortisone several times to alleviate various pains, and always with success, but not for the ON, which was gone before I used the cortisone.