IVSM and ON

[katt275]

Hi everyone,

Last November, I had a very severe attack of optic neuritis. I woke up one Sunday with blurred vision, saw my neurologist the following Wednesday and vision was 20/70 in right eye, and by Friday I was completely blind in my right eye. I went through 3 days of IVSM with an oral taper. The steroids didn't help at all. I remained completely blind in my right eye for six more weeks. I then noticed that I could see some again out of that eye. Not a major improvement but I could see outlines of objects and some light. I'm very thankful that it improved at all, but I'm still hoping that it will get even better.

I saw my neurologist last Tuesday. He tested my eye again and he told me it was worse. I knew this wasn't true. He was looking at my chart from last November when it was 20/70. He forgot or didn't make a note in my chart when I called him back last year to tell him I had gone blind in the eye. I tried to correct him but he cut me off. (Not a very nice guy. I'm looking for a new neurologist) He told me he wanted me to do another round of IVSM. I called his office the next morning and explained the situation to the nurse. She spoke to him, called me back, and said he realized he had made a mistake. I asked her if he still wants me to take the steroids and she said that he does. I said "Even if there's no active inflammation? " and she said that he said there still could be some inflammation so he wants me to take them. All of the research I have done says it wouldn't make a difference at this point. I don't think I want to put my body through the steroid nightmare for no reason. What are your thoughts about this?

P.S. I have been on Avonex for almost 3 years. I am about to start Tysabri. I had a brain and cervical spine mri done a month ago and it showed some changes but no active lesions.

[jreagan70]

All of the research I have done says it wouldn't make a difference at this point. I don't think I want to put my body through the steroid nightmare for no reason. What are your thoughts about this?

Hi katt:
Your research is correct. More steroids in the absence of active inflammation won't make any difference. You would be putting yourself through the steroid nightmare for benefit to your vision. (There's a whole other school of thought about periodic steroid pulses as an overall strategy for treating MS in people who are having systemic flares, but that obviously isn't why your neuro suggested more steroids.)

Steroids only shorten the length of an episode, they don't have any effect on the final outcome of vision. That's another reason why more steroids won't make any difference six months out.

Have you thought about seeing an ophthalmologist about your eyes? Your neurologist didn't really "test" your eyes. He's basing his decision only on how well you read an eye chart, which doesn't say much. Your neurologist can't examine your eyes properly so can't really know what is and isn't going on with your eyes or why you see the way you do.

Now would be a good time to go and get a full eye exam from an eye and vision specialist (ophthalmologist or optometrist) to find out what's really going on with your eye health.

And by the way, my worst episode of ON took a full year to recover, even though the guideline says it probably wouldn't get any better after six months. So there's still a chance your vision could improve some more.

[jreagan70]

You would be putting yourself through the steroid nightmare for benefit to your vision.

Oops! I think you may have figure out from context that that was supposed to say,"You would be putting yourself through the steroid nightmare for NO benefit to your vision."

[katt275]

Thank you for your response Jreagan70. The neurologist I go to is a neuro-ophthalmologist. I did have an OCT exam done in his office a couple months ago. I'm not sure if that shows inflammation. I also had a mri, but not of my eyes to check for inflammation. He looked in my eye and said the nerve looked pale.

I'm glad you recovered from your ON attack. Were you left with any damage?

Thanks again.

[jreagan70]

Well, here's a funny thing. I've read several other similar stories over the years about neurologists doing odd things that competent ophthalmologists wouldn't do, and the posters said that their neurologist was "also" a neuro-ophthalmologist. To that I say .

It already takes the whole 7 extra years and sometimes more for an ophthalmologist to specialize in ophthalmology and take on a neuro-ophth specialty. Neuro-ophthalmologists generally don't act as systemic neurologists. There isn't enough time in their training to become that all-encompassing. So the reverse has to be true for neurologists. Where would a neurologist find the time to take on a neuro-ophth subspecialty? How good at it can they possibly be?

My neuro-ophth, and his colleagues on the ophthalmology side of neuro-ophth, don't and would never dabble in systemic neurology. I have a neurologist and a neuro-ophthalmologist and they don't interfere in each other's territory.

It's just strange that a neuro-ophthalmologist would make decisions about your eye/vision without doing an full exam. What about visual fields, color testing, time in the microscope? He may say he's a neuro-ophthalmologist, but he isn't handling your care like any neuro-ophthalmologist I've ever seen. (Of course your nerve is pale -- you had ON. )

I'm wondering how a "neuro-ophthalmologist" could have "made a mistake" about your eye being "worse" and why he would suggest steroids in a situation that even your research tells they aren't indicated? None of my neuro-ophthalmologists or general ophthalmologists would have suggested it. I sounds like something a neurologist would do. Maybe now you can appreciate why I think it's always a good idea to have a separate ophthalmologist.

And I can appreciate why you're looking for a new neurologist.

Thank you for asking about my ON. I've had many episodes in both eyes. But it was the first one in one eye that did the majority of the damage. About 1/4 of my visual field came back pretty well. Another 1/4 came back a bit and about 1/2 didn't recover at all. It took about 6 months for most of the recovery, but I got some more up to about a year later. With half of my field being gone, that extra bit of recovery was really helpful.

I hope your vision continues to improve.