Optic Neuritis getting worse with IVSM?
 

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'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.:hug:

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.

I'm SO sorry to hear that you are having such a tough time of it lately, Legz. I really hope that things start improving for you soon and I am keeping you in my thoughts and prayers.:hug:

I have had no experience with IVSM so I can't comment on that unfortunately but I would definitely speak to your Doctor and see what he/she thinks you should do.

I'm sorry that I can't help you more. Just know that I care about you and if you need to talk, I am here for you as I DO understand some of the side effects that you are having!!!:hug:

Take care of yourself and you are in my thoughts. Please keep us updated when you can!!

You know Erin you may be right. I was knitting on the loom earlier. I was trying to finish up a baby blanket for a friend of mine, which I gave up on when my other eye starting messing up. I am so bored that I actually called my mom and asked her to bring my DD and come spend the night. Fiance is pulling a 24 hour shift. One down side to living 50 miles away from all of my friends and family. So she is on her way.

Oh yeah so I can't really eat anything b/c of the heartburn and have been on a fruit smoothie and yogurt and water diet for 3 days. And I have still gained 8 lbs in 4 days. Told mom to bring me some books on cd to listen to. Waiting for her to get here so she can help bag my arm so I can take a shower.

I think next weekend after the steroids have worn off and the MRI's are over that I am going to kidnap the fiance and go to the winery and just take a couple days off.

Sorry you are feeling worse. sending (((hugs)))

((((((Legz)))))) The nurses at the hospital told me that IVSM doesn't usually seem like it's working until you have been off of it for a week or two. I found that to be true.....so hang in there..:hug:

You're loom knitting?? I've tried that. Goes too slowly for me. Looks cool, but too slow. I crochet more than I knit, hand knitting goes a bit faster than loom knitting for me, but still too slow for me. I crochet so much more quickly. I still love to play with yarn and the hooks and the pointy sticks.

I just finished my first knitted wearable (other than scarves) I knitted two wrist warmers. I'm surprised I actually was able to finish BOTH of the wrist warmers. (basically it's a knitted tube, open on both ends, that fits over my wrist and has a thumb hole for my thumb to stick out of.)

What I basically did was knit it flat, like knitting a scarf, and then when I decided it was long enough, I folded it into the tube shape and sewed it up, leaving a hole for the thumb.

Too bad I dont like wearing the left handed one. My left hand has had some weird numbness since just before Xmas, and I dont like the way the wrist warmer feels on the ball of my thumb.