A question about O.N. (Optic Neuritis)
 

I mainly hear from folks who had O.N. pre-diagnosis or at diagnosis... what I'm curious about is how common is it for O.N. to develop later on with MS?

Have any of you been diagnosed with O.N. well into the disease course?

I'd be interested to hear your stories.

I've only had ON once and it was before and during my 2nd big exacerbation, in 1992. It went away after IVSM for three days. I never had it again, to this day (knock on wood)

I was diagnosed in 1997 and had my first and hopefully only episode of ON 2 months ago. Like Sally it went away after 3 treatments of IVSM. I have my 2 month check up next Tuesday. Coincidently I found out I had a cataract ready to be removed which was a big cause of my very blurry vision.

I don't know, Laura.

I have never had ON. If I was to develop ON now it would be well into the disease course for me. I'm sure I could develop ON just like anyone else with this disease --- I just hope it doesn't happen ;)

I hope it doesn't happen either! Thanks for the responses :grouphug:

I get ON all the time! its outrageous and I wish it would leave me alone. its one of my triggers for flares, and it is destroying what little vision I have.

I have lesions on BOTH optic nerves, so they behave quite badly when I am stressed, or over heated, or tired. it is said that the optic nerve is covered in that same fatty mylin as the brain, and MS likes that stuff.

The GI tract is also covered in a fatty substance that is similar to mylin and MS frequently can attack the GI tract and create all sorts of issues. I have alot of tummy troubles too.

I hope you never have to experience ON. its frequently one of the first or hallmark sx that someone has MS to start with.

I've heard O.N. is painful - is this always the case?

I got curious about O.N. because the last 2 days, I've had a spot in my left field of vision that's 'gray' or blurry. When I try to look with that left eye only, I see things very dulled/gray (like black text on white looks gray and almost like pencil that someone's erased parts of).

I was told my optic nerves looked to be in great shape, so now I'm concerned that perhaps I've since developed (or started to develop) O.N. This isn't painful, and not completely encompassing the entire eye.

(just noted - when I look at a white wall, the spot looks more like what you'd see if you were to stare at a bright light too long.. only it doesn't disappear).

Luckily I'm already lined up this month to see my GP... and review my last MRI scans, or discuss my next neuro appointment to do so. I'll have to bring this to her attention if it doesn't subside. I guess it's off to the ER if it doesn't improve. Sigh.... :rolleyes:

Stinking MS!

.... granted this may not be MS alone. I had a wicked vicious headache yesterday (probably more in line with migraine) so I'm wondering if the eye issue may be more migraine related. The headache was across the forehead, but more pronounced on the left (as is my neuralgia in general).

Can you get in to see an ophthalmologist? Any sudden change in eyesight is worrisome. I don't take chances with my eyeballs. I only have two, and I like 'em both.

I'm not positive, I'll give my GP a call on Monday to ask about this situation... I'm also not sure if an Ophthalmologist here (NB, Canada) requires a referral... I know many specialists do.

I had terrible pain with my one episode. I just wanted my husband to hold me and make it all go away.

Eye's no better today... the pain's not over the top at all, more an annoying pain (like you'd get with tired eyes). Still have a dull spot that looks like I've been staring at the sun or something. Wearing my glasses (I'm nearsighted) is helping a bit with the clarity issues, even close up.

Spent the day (after getting home) listening to my TV with the football games going, and baked yummy bread instead. My eye hurts like heck, but my apartment smells heavenly and the bread is super yummy (carrot bread... mmm!!!).

Doctor tomorrow (phone call)... we'll see what she recommends.

A phone appointment with doctor? I hope he doesn't charge.

Does the color red look muted to you? That's one of the things that tells me if I'm having an ON problem or not. My ability to see color gets all screwed up. (hate that part about ON the most)

I called my GP and I'll be going to see her today at 2:45. It could be an IVSM prescription then. We'll see. I've never had such a vision problem before, so it's disappointing and discouraging as you can imagine.

I'm glad I have all of you to help get me through. :grouphug:

Erin, I've not noted a reduction in my perception of the color red, just a blurry spot like I've stared at the sun or a light bulb too long. Annoyingly painful, but not overboard.

Keep us posted!

Ask and ye shall receive! ... Wish I had better news, but this has been deemed a 'flare up' by the GP, and she's trying to get in contact now with my neurologist to get the IVSM going (thankfully, right away she mentioned IVSM is the best course for O.N. I was all ready to argue against prednisone to treat it).

Solumedrol is covered by Medicare in Canada, thankfully. So I'll just take my gum along with me back to the city hospital based on when/how they schedule me to start infusions.

Last IVSM was May 2008... overall, I think I've done pretty well avoiding the 'lapses.

By the way... the eye is progressively worsening today, so I'm glad I went in. Now it's feeling dry and itchy almost... even when closed. Plus my regular left side pain is flared up big time, noted swallowing feeling 'odd', etc.

Blah!!! :(

Okay that was fast, I'll be getting a call tomorrow morning advising me of when and where to go and get the steroids by IV, then they'll probably want me on a taper pack of prednisone afterward.

For now, a prescription's being called in to the drug store for a stomach medication to take along with the steroids. Good thinking doc, thanks! :)

Thankfully the GP and neuro are both very adamant about wanting me off work to heal. I don't think I could work with this as is!

First drip was done today (day 1 of 5). 3+ hour drip. They're already talking taper pack of prednisone after. I guess 3+ years of no IVSM to a 5 day infusion string requires a taper perhaps (or so my neurologist feels). Meh, I'll roll with it.

My boss and another manager visited today with short term disability forms for me (nice of them to bring those, saved me a trip) and tried my bread I'd baked. They really liked it. :) I told them I could bake and they were skeptical! Just because I dress like a pseudo hippie, listen to metal music, and play way too many videos games doesn't mean I can't bake! :p

4 more days to go.. I noticed some of the old sensory symptoms returning to me today. I guess I got to the IV drip and doc just in time. :cool:

I hope it works great for you this time, Laura..:hug:

Laura I'm glad you are started on treatment. Never fool around with your eyes or mobility. Always call, it never hurts to let them know how you are feeling.

I found on IVSM I would sleep 4 hours and be awake for about four hours. I never slept long enough but I slept often enough, to make up for it, since I was home anyway.

Eat potassium foods like bananas, potatoes, yogurt and plenty of calcium foods or supplements with magnesium and zinc added, so your bones stay healthy from the steroids.

I hope your eyes feel better soon. I had O.N. a few times. Sometimes with the ice pick in the eye pain or the blurry Central Scotoma vision.

Two relapses in four years in pretty good. :hug: I had them 4 a year for a about 5 years in the middle of my 30 years with MS.

Good luck with the steroids. Keep us updated on your eyes.

Eye is 'worsening' ... but I'm not too surprised either. I know the steroids will take a while to work.

Went bright and early this morning to have round 2 of IV done, 3+ hours again on the drip. Still with the annoying port in my wrist too. :p

Weather's dreadful here today. Windy, rainy, cold. Isn't helping the 'healing' process, that's for sure.

Least I have plenty of yummy homemade comfort foods to eat. Made a carrot squash soup, seasoned with cinnamon. It's like Autumn in my mouth! Warmed me right up :) Cooking and baking are so rewarding and relaxing (I find!).

That soup sounds like a cure to me..:D

Feel better soon..:hug:

Thanks dear :hug:

It was really easy to make:

1) Cut a medium butternut squash in half, remove seeds, place on lightly oiled cookie sheet/pan in oven for 35-40 min at 350F.

2) Remove from oven, let cool, then scoop squash out of the skin. Toss skin.

3) Heat 2 TBSP oil (I used Olive Oil) in a pot on medium heat. Dice 1 medium onion, and about 2 inches of peeled and diced fresh ginger. Add to pot carefully when oil's heated. Continue on medium heat until onions turn translucent a bit.

4) Add 4 cups of water, 1 LB of peeled, diced carrots, the squash from earlier, and the diced ginger. Bring to a boil.

5) Continue to boil (I put my burner to 7-8 of 10) for 20 minutes or until carrots are tender.

6) Remove and let cool a bit. Then take the mix and put in a food processor. Puree the mix.

7) Divide into 4 potions (or whatever you choose). You can add salt/pepper at re-heat to taste, but I don't, I add 2 pinches of cinnamon and it tastes sooooooooooooooooooooo good! Warms the tummy up nice. :)

(had to share... such an easy recipe to make!)

Day 3. Went fine. I guess the Solu Medrol doesn't so much taste like pennies (as I recall) but it has a nasty taste. I realized after my coffee was gone how gross the drip tastes!

I was so excited to be at day 3.... yay they'll take the port out for a night and put a new one for the last 2 days! Wrong! They said I have great 'return' through the current vein (after flushing the line) and they're trying to see if I can go through the full 5 days with only the 1 port. Sigh....

Can you guess who will be washing their hair with 1 hand tonight? :\

I'm noticing a flaring up of other MS symptoms that had been dormant for quite a long time. I am guessing this is my disease and body's initial kick back punch. I feel worse now than when I originally started the steroids! I'm wearing my sunglasses indoors (tried an eye patch - wasn't good) which helps a bit, but lucky me, my trigeminal nerve's flared to heck and the arm of the sunglasses pinches my head in a spot that's in pain/sensitive. I can't win!

Least the sunglasses cut the brightness down significantly on the PC. With that said, I can't look at black on white very long, or the eye worsens/pain increases.

Day 5 done, IV SM done, port out of the wrist. Eye has not improved, but isn't worse today from yesterday either.

Now I do a 7 day taper (8x4x8x4x8x4x8 prednisone/day) and see my GP this week coming. I have no idea when I'll see my neurologist yet. Haven't heard a peep from his office.

I had postpartum optic neuritis about 9 moths after the delivery of my first child in 1984. A few weeks of blurred vision which later resolved. My daughter also had the same thing after the deliver of her daughter, Blurred vision in the ribht eye that later cleared up. I don't know if this has anything to do with the Valsalva maneuvers associated with childbirth or not. Had 14 years of no symptoms after the CIS of optic neuritis. Then have gotten progressively worse the past 6 years to where now I'm considered SPMS.

Were you Diagnosed with MS before or after the birth of your child? How long, before DX, did you have MS symptoms? :hug:

Dmplaura, I have no experience with ON - yet - but I wanted to drop you a note telling you how sorry I am that you are dealing with this. I remember seeing a message you left a few weeks ago stating that you were fortunate to have avoided many of the typical MS issues so far. I feel the same way, although I know that it can change at any time.

I just wanted to let you know that I noticed your change in status and wanted to track you down and tell you that you're in my thoughts. :holysheep:

Laura, how are you doing? :hug:

Awww thanks guys and gals!!!! :grouphug: I am 'sick' for my mood, only because a more 'fitting' word wasn't available!

Overall I'm doing okay. Eye's slowly improving, however I attribute this to time away from computer and tv. Wearing my shades everywhere too.

I'm off work until at least November 14. My GP was great, called up the neuro, asked me about Copaxone (to which I said I don't believe 30% is 'right' for me to go back on it). She didn't argue with me one bit, just noted it down.

My neuro, whenever I see him, may have a different opinion.

I discussed my week of prednisone with my GP as well, said I didn't think a 7 day, 8,4,8,4,8,4,8 (day to day) would be sufficient as a taper.. and asked "Was I put on this dosage as to discuss how to add more 'weeks' on to the current prescription?" The other doc I'd seen had made no note as such, but my doctor agreed that I should be extended on the prednisone, so that's what we discussed doing (rather than take 8 pills for the last dose per above, I'll take 6 and then begin the next prescription which will slowly ween me off).

Anyways, as I work 100% on computer, and my eye needs to 'heal' (and isn't close to being back to 'good') I'm off work for a month. Which is okay with me, I'm still paid via STD (short term disability) since I'm salaried. So the time off will probably be just what was needed for me.

Just trying to de-stress, rest up, and enjoy 'Laura' time. Thanks for keeping me in your thoughts again, I really appreciate it. :)

So sorry you have to go through this, Laura. Big hugs and prayers are with you :hug:

Thank you! :) I'm on the new prednisone taper prescription now. 4 today, 4 tomorrow. My sense of smell is coming back :o !.... I forgot what smells I was missing! I normally have very altered taste/smell.

Eye's a lot better now... still wearing shades and keeping eyes off digital, but I'm slowing incorporating some back in. Was able to watch some football today. :)

Woohoo, Laura, nice to hear..:)

I have O.N., sometimes it feels like and ice pick stabbing me in my eye. There have been a couple of times that I have woke up and I saw only grey with a few blacker visions were the door was, it was very scarey. Mine hasn't gone away, it just flares up from time to time by being overworked, fatigue, heat and whatever else triggers all this MS stuff.

Eye pain
 

I agree with Blessings. Ask if you can get an appt with a Neuro -Opthamologist. I have one and he is well versed in MS also. Mine works well with my regular Neurologist. Prayers for you!