Talk about irony. The reason I was put on the steroids right away was because the ON in my left eye. I am on day 4 of 5 of the IVSM.

I swear I woke up this morning and now both eyes are acting up. Before it was only my left eye.

Oh the nurse finally came out yesterday and moved the IV after my vein blew and my hand is still swollen from where it filled with IVSM.

Side effects so far: mood swings, nausea, hot flashes, cold sweats, indigestion, the shakes, fatigue, heartburn, lack of sleep, and a over powering urge to beat the crap out of somebody. Oh let's not forget the blood sugar yo yo that's making me nuts. lethargic and depressed.

ON has worsened, I have seen no change in the numbness and my balance is getting worse too. I think it is safe to say I don't believe the IVSM is working. But I am prescribed one more day and I will finish it.

I can't speak to the other eye, but I'm going to guess it's a side effect of the steroids or stress. Bi-lateral ON is actually not common in MS and I think it would be unusual for another attack to happen WHILE you're on steroids.

As far as ON, it usually hits a curve and recovery happens in reverse, the way it came. I don't know that steroids will halt the progression of sx once it begins but it should help your vision recover faster and avert further damage because of the reduction in inflammation. The only way to really chart progress once ON begins is by follow-up examination. The visual field tests will usually show improvement long before you yourself will see it.

I don't think steroids have the effect of "averting further damage", bearygood, at least when it comes to ON:

"There is no definitive evidence that treatment with steroids produces a more complete recovery than that which would have happened without treatment."

".... there may be inflammation and/or demyelination of the optic nerve that occurs without affecting visual function so that the person is not aware of any changes. In these subclinical cases, visual evoked potential (VEP) testing is still able to demonstrate evidence of lesions or damaged areas along the optic pathways. It is for this reason that VEPs are often used as part of the diagnostic workup; a positive finding can provide evidence of a second demyelinating event even in the absence of visual symptoms."

http://www.nationalmssociety.org/abo...tis/index.aspx

Also, relapses only very rarely result in permanent damage anyway:

http://mrbrunches.lefora.com/2008/09...sult-in/page1/

Beary, I just had a VEP test last week, as they want a "baseline" for damage going forward. They could see the damaged nerve just by looking with the drops and magnifying equipment, but apparently the VEP will give them a better "measure" of nerve damage.

I am going for a visual field test in a few weeks too (had one in Dec as well) but it was a digital one that apparently doesn't tell them as much as the older manual type. I don't really know what that means, but they wouldn't accept the results from my Optomotrist, and I have to have another. From what I gathered though, that test determines if we have loss in peripheral vision, doesn't it? That's what it seemed to indicate by having to hit the button when I spotted the bright lights in my vision.

Leggz, I have no idea why the steroids "appear" to have stirred up your ON, but I'm wondering if it was just coincidence. Maybe that was the next thing that was going to pop up anyway, and the timing just coincided.

I'm glad you are done the steroids, and hope you get to feeling better in the next week or two.

Cherie

Yes, this is exactly my understanding with the caveat that if caught early enough steroids can be helpful in averting damage by reducing inflammation more quickly but the key is the health of the optic nerve. I didn't do steroids for exactly the reason you cited, coupled with the fact that I'd already hit the curve by the time I was dxed and my optic nerve was healthy, exhibiting no pallor. My NO still wanted me to do steroids so that I'd recover more quickly but didn't push it because my optic nerve looked good.

I've never had a VEP. My neuro-op ordered an MRI of the optics as soon as she dxed me with ON and did a follow-up a year later. She also took a picture using OCT. I'll have another follow-up MRI next month to track the progress and also have my first follow-up OCT.

I will ask my neuro-op for more clarification on whether there are ever cases where steroids have benefits beyond speeding recovery when I see her next month and report back. Perhaps I misunderstood.

Yes, the VF tests show if and where in the perhiphery there is vision loss. Still stumped by what the manual test is and look forward to finding out!

I first had an appointment with my optometrist, who believed that I was probably in an ON attack, or perhaps more likely, just had Uhthoff's from an old attack. I told her I didn't see the point in knowning, as I would have no intention of doing steroids anyway. She said "well, maybe there is something else they can give you now . . . and she referred me to a neuro-opthamologist anyway.

So I met with the N-O, and we talked about my history with ON (which dates back to 2004). She picked up the note from the optometrist, which had about 2 lines on it, and she said "I hear you are not interested in steroids?" I thought that was soooo... funny, because the optometrist said so little on that note, but made the point of tattling on me about not wanting steroids.

I told her that it was my understanding that steroids could not improve the recovery, so I didn't see the point in doing them (given the side-effects and risks). She shocked me by agreeing with me. She said that she would never recommend steroids to a patient UNLESS the person was completely blind and had the potential to "hopefully" realize some recovery from that. Even then, she said she'd leave this to the patient to decide because steroids bring their own set of problems.

I am going to ask about that visual field test, and how it may be different from what I already had. I got the call from the place where I have to go, and I did mention I already had one in Dec, but they said their's was more extensive. I can't imagine that . . . I had a heck of time with the first one. I was so exhausted, I came home and slept for 4 hours!!

Cherie

You know, it's possible that we're saying the same thing in a different way... That kind of vision loss would be more in keeping with damage to the actual nerve. But I will ask.

More than your finger was tired from the VF test?

interesting Legz, i just got off an ivsm treatment about ten days ago then tapered down and my right eye which is ok has been giving me nothing but trouble now and chucky my headaches is back with a vengance

I hope you get to feeling better real soon

I'm sorry you're having such a rough time of it, Legzz. I'm taking Prednisone right now but it's the oral kind......IV steroids and I don't get along either. Plus, I'm concerned about damage to my bones (osteoperosis) from too much steroid use.

I hope you can finish this dose out and not have to subject yourself to this again anytime soon. It sux to feel bad already and have the remedy make you feel worse. Hope you feel better soon.

I don't much about that stuff. Okay, nothing. I hope it kicks in soon before you kick someone. Feel better soon.

When I had optic neuritis the first time (August 2006, left eye) my good eye started to have problems. My ophthalmologist told me that it was trying to compensate for the ON eye and it was tired.

Have you been reading a lot? I know I tried to read a lot, in the dark, on my computer (dim light made things feel better) and that reading on my computer and dim light was making the good eye wear itself out.

There are computer programs that you can use that will "read" text on a computer out loud to you. On a Windows computer, it's in the Accessibility folder. I'm not sure where it's located on a Mac, but I think Macintosh computers have better voices.

I bought a program for my Windows computers (didnt have a Mac in 2006) that I still use to read even tho my eyes are better now. It's called TextAloud. I bought the full version of the program since the full version had better sounding voices on it.

I'm hoping to buy a Kindle 2 later this spring. (already have a Kindle1) The Kindle is a portable e-book. The Kindle2 has a nice text-to-speech feature on it. (apparently doesnt work for every e-book because the Author's Guild is being a pain in the butt about allowing their books to be read out loud by a Kindle)

If I get a Kindle2, and my eyes go fubar again (they seem to go bad every spring/summer) I'll be able to use it as a portable audio reader and not be stuck using my computer to read to me...and it'll be easier to find interesting books.

I hope your eyes get better soon. Optic neuritis sucks more than numbness does. (well, maybe they both suck equally) Optic neuritis is a lot more depressing, at least to me. Since my hobbies (reading, knitting and crocheting) are easier to do when you can see. (I can crochet and knit blindfolded, but I like to look at the yarn colors)

I never did do any steroids for any of the ON exacerbations that I've had. I just let my eyes recover very slowly. (took about a year for the first case of ON, the others all seemed to resolve within 2 or 3 months or less) I'm saving up the steroids for another bout of vertigo or something worse than that.

Good luck with the steroids. Hopefully they'll start to help.