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    Optic Neuritis Question

    So, I'm a researcher and questioner at heart, and make certain to completely understand the facts about a topic rather than one account here or there that says what I want in my heart to be true. That said, I've dug up quite a bit about ON and what to expect (ok, well, I know you can't really "expect" anything with ON since much of it is a wait and see sort of situation, but I digress...), and my question is more of a "what would you do now?" advice type of inquiry.

    Facts:
    2 weeks ago today, woke with an odd lack of sharpness to my vision. Not terrible at this point really, but definitely not quite right. My contacts were past their disposal date, so I thought eh, maybe it's that -- switching to fresh ones didn't help. Squinting didn't help. Rubbing my eyes didn't help. I was pretty sure it was ON, though I'd never had it before.

    Called my neuro 1st. Talked to the NP, who advised giving it 24 to 48 hours, but no more, to see if it resolves itself. She also instructed me to call back if it got worse within that window as well.

    2 hours later - much worse. Went from blurriness at the edges to like I was looking through a heavily frosted glass shower door. Called neuro back, got NP again, who said she would talk to him and call back.

    20 mins later - neuro calls himself (highly unusual, btw). Asks me some questions, says sounds like ON, asks me to see if I can get in to see an opthamologist. Told me, at this point, I am just looking for confirmation of ON and not something else, so just find one you can see for that and call me back ASAP.

    Highly rated opthamologist office nearby has an opening in an hour, due to a cancellation. I go in, the techs giving me those prelim tests were acting like I was a sideshow with my pupil reaction (dilating crazily more so when I covered my good eye than it did with the penlight alone). Visual field test shows I can't see squat in the upper two quadrants of my right eye, and very little in the bottom two. Left eye is good as gold. They dilate my eyes, doc comes in, looks around in there, nods and says, yup, it's inflamed. ON it is. Then, things get weird. She was all wishy washy -- "Um, I guess I can give you prednisone. Not sure how much, ummmm..." Then counting on her fingers, shocked at how many pills it would start on, etc etc. (In my head, huh? This is highly rated? You'd think she never saw ON once in her whole life. Is that possible? She wasn't a super young doc..). Finally, she says, I'll call in 300, if you need more we can refill. I already decided I wasn't filling it without talking to neuro, so I just thanked her and left.

    Called neuro back (this is still same day, before noon). Confirmed dx of ON to him. I tell him about her Rx of prednisone. He laughs and says, "you didn't fill it or take it, did you?" I say no. He says "good, there are two treatments for ON - neither of which really change the end outcome, I'll be honest, but one thing you never do is oral prednisone." I say "OK, what are they?" He says, "IVSM or nothing. IVSM will likely speed up the recovery, whatever recovery that may be, but either one will likely have you end up in the same spot. Up to you." I opt for IVSM. I don't really have too many side effects of it, and sick as it may sound, I could use a vacation away from home to get some homework and lesson planning done. (hey, at least I'm honest).

    So I do the IVSM - 5000mg total, 750mg twice, then 500mg thereafter, every 8 hours. Go home on the oral taper. During my stay, my vision did get better, but hasn't returned to "normal" yet. I know it is still early, being only 2 weeks, and being that I am still tapering on the 'roids, etc. It is like I have a large greasy smudge on my eye, but if I really study what I see, it seems that my vision UNDER that smudge is clear. Like, I can read words, but the edges are stretched, or pulled. Still a buttload better than it was at its worst.

    Ok, so that's the background.

    Here's the question:
    Should I still seek out a neuro-opthamologist to have in my back pocket, just in case this occurs again or does not continue to improve? Or is it a moot point now? I understand that having had two weeks go by, any tests I have done now will not be an indicator of my worst vision/nerve issues. I am not 100% confident in the tests that were taken at the optho's office that 1st day - she really did seem like a dope.

    My neuro by the way, is one of the best - medical director and researcher of the MS specialty dept. (not just neuro) at a top US ranked hospital. He is obviously not a neuro-opthamologist, but lists optic neuritis as a area of concentration for research and treatment. I trust him completely, and he has not advised me whether or not to seek out a neuro-opthamologist. He told me to follow up with him in October, when enough time has gone by to more realistically see how far I've come. He said he thinks, based on how I responded, and based on years of patients, that I will continue to get better, but that it is not a promise he can make for certain. Based on that, I just don't know that it matters to go through a neuro-op visit, or if I should just so I'm "in the system" if this happens again.

    What would YOU do?
    "Now the sun is setting, getting ready for tomorrow. Soon the moon'll be glowing, showing off the moonlight. Take a look above you, discover the view. If you haven't noticed, please do. Please do. Please do." - Kermit

    "I'm through accepting limits, because someone says they're so, some things I cannot change, but til I try I'll never know...I'm defying gravity, and you can't pull me down!" - Elphaba, Wicked


    First Symptoms - 9/05
    Officially DX'd RRMS - 11/14/05
    Rebif - 12/18/05

    #2
    I have had ON countless number of times since I was DXed in 1998 and mine was quite different than yours. Each time I would go to bed with a severe headache and wake up and it would be like I was looking through a very dark screen and it is always painful.
    I do have severe Optic Nerve damage to both eyes.
    I am no longer seeing a regular eye doctor. I have a Neuro Optomologist.
    With MS and eye problems we MSers need Neuro Optos in my opinion.
    DX'ed 1998
    RMMS until 2012
    SPMS 2012
    Cytoxin

    Comment


      #3
      (I should note, I have had zero pain with my ON.)

      Thanks for your input babymonkey! And so very sorry to hear about your permanent damage and the way ON presents itself for you, that really sucks Hugs to you!

      I guess it can't hurt to see one, I guess my personal trepidation is that I just dread adding another doctor to my list of people I have to take time off work to see, fight to get an appointment with, and all they'll say is "not much we can do but be patient and see what happens."

      The general consensus seems to be that ON is ON, and what will be will be, right? I have seen comments of people all over saying to get on IVSM right away to prevent damage, but then, I see the ONTT study clearly states that choice of treatment has no effect on final visual outcome, meaning to me that getting on IVSM is not really preventing anything and just speeding up the recovery process (an admitted plus to IVSM in my opinion - less time blind is less time blind!).

      I guess I could have asked a more specific question:
      What is a neuro-optho going to tell me, or do for me, that is any different than what I just went through? Meaning, had I seen one, wouldn't I be in the same situation as I am now? And if I get one, and I have a bout of ON in the future, won't a Neuro-optho run tests, say here's your results and where you are now, let's do IVSM (or not) and see where you are in 3, 6, 9, 12 months? What exactly does a neuro-optho do for me that is different from the course of how things went for the most part anyway? Does that make sense?
      "Now the sun is setting, getting ready for tomorrow. Soon the moon'll be glowing, showing off the moonlight. Take a look above you, discover the view. If you haven't noticed, please do. Please do. Please do." - Kermit

      "I'm through accepting limits, because someone says they're so, some things I cannot change, but til I try I'll never know...I'm defying gravity, and you can't pull me down!" - Elphaba, Wicked


      First Symptoms - 9/05
      Officially DX'd RRMS - 11/14/05
      Rebif - 12/18/05

      Comment


        #4
        Originally posted by Singin'Gal225 View Post
        My neuro by the way, is one of the best - medical director and researcher of the MS specialty dept. (not just neuro) at a top US ranked hospital. He is obviously not a neuro-opthamologist, but lists optic neuritis as a area of concentration for research and treatment.
        Well it sounds like the one thing he doesn't know is that the warning against oral prednisone applies only to LOW dose prednisone which was the usual treatment for ON 20 years ago. It does NOT apply to HIGH dose oral prednisone - the same or a bit higher dose than is done by IV.

        I've had ON a few times and my neuro-ophthalmologist has prescribed high dose oral prednisone for me and also has me drink actual Solu-Medrol at high dose (he likes that better because he thinks it's easier on the stomach) because my veins won't put up with IV's anymore. Many of his colleagues are prescribing HIGH dose oral prednisone for some patients for ON because it's much easier and cheaper than IV.

        The ophthalmologist you saw might have been shocked at how many pills it was to start on because she was counting on HIGH dose oral prednisone. The equivalent to IV is 25 pills a day of the highest dose made! If she was counting on smaller pills it might take 300 to get you through treatment and a taper. If she was considering the old low dose - which has been warned against for 20 years now - you wouldn't need anywhere near that many. But it's not possible to say now because you didn't have it filled.

        My doctor told me that the problem isn't that the prednisone is oral it's that the old traditional dose is MUCH too LOW a dose. There has been research that shows that oral prednisone is just as effective as IV as long as it's the same dose. I've read the same thing in more than one place. He said that IV wouldn't be good either if used at a low dose.

        So it sounds like your neuro is a tiny bit behind the times maybe because he isn't an ophthalmologist? According to my ophthalmologist and everything I've read up on, the choice ISN'T IV or nothing. It's HIGH DOSE ORAL OR IV or nothing. Never low dose, which is usually oral. If you see a neuro-ophthalmologist he or she might very well confirm that.

        The gold standard in research for ON was the Optic Neuritis Treatment Trial which said that 1000 mg of Solu-Medrol a day for 3 days with an oral prednisone taper was sufficient. Somehow neurologists - not ophthalmologists - started treating with 5000 mg total. My neuro-ophthalmologist hasn't been able to figure out why the neurologists decided to do their own thing because 5000 mg isn't any more effective than 3000 mg and increases the risk short term side effects and long term damage from the steroids.

        My first IV treatment was broken up into 4 does a day. After that it was always a 1000 mg drip once per day for 3 days. There isn't any reason to break it up. The original research recommended it that way but after just a few years of use it was found to be unnecessary to break it up. So you'll have to ask your neuro why he's recommending breaking up your dose during the day when almost nobody does it that way anymore and hasn't for years.

        Research also showed that the oral taper afterward gives no medical benefit. My neuro-ophthalmologist doesn't prescribe an oral taper anymore and I haven't done one in years. It only adds to the agony so I don't miss it.

        It's nice to have a neuro-ophthalmologist in your back pocket just in case you need one again later. My general ophthalmologists got more uncomfortable as I had more episodes of ON so one of them finally sent me to a neuro-ophthalmologist. It was SO much better to see a "super" specialist who routinely saw people with recurrent ON. I so wish I had been referred sooner.

        If you have another episode it will be convenient to see a doctor who already knows you. You won't be so panicky wondering who to go to or when you can get in. I've been in that position before and I think I can safely say that you don't want to be! You don't need a neuro-ophthalmologist after a first episode of ON but if you have a second episode you get more "special" it's a good idea because you'll need to have someone who can properly test you and document your eyes.

        Another reason it might be nice to have a neuro-ophthalmologist and be "in the system" is in case you develop a different problem - like double vision. The doctor will already know you and can tell you about how ophthalmologists handle double vision. Your neurologist isn't trained to do that no matter how good he is at neurology.

        But for this episode of ON there isn't anything the neuro-ophthalmologist can do. You've already been treated with steroids so if your vision doesn't come back then it isn't going to come back. I got some of my vision back but some of it never came back.

        Your neuro was right about the steroids not having any effect on how much vision you get back. Research showed that people who are treated with steroids recover their vision faster but there's no definition of what "faster" is. For some people it's a couple of weeks, for some people it's a couple of months, for some it's a couple of years and for some people it's never.

        If I remember correctly my neuro-ophthalmologist said that a lot of people (maybe most) get some recovery of their vision within about 6 weeks. So if you've already had some improvement that's a good sign. It takes me 3 to 6 weeks or a little more to get my vision back.

        The other guideline is that anything that hasn't come back within 6 months probably isn't going to come back but that isn't an absolute. I had some recovery of vision a whole year later after one of my episodes but it was only that one time.

        So October sounds good for a follow up with your neurologist. It might also take that long to get in to see a neuro-ophthalmologist for a non-emergency appointment. You might need a referral from your neurologist because a lot of neuro-ophthalmologists won't take a patient without a referral from a neurologist or ophthalmologist or optometrist. If you get the ball rolling now you should be all set when October comes.

        Comment


          #5
          u need a neuro

          Definitely get a neuro-opthalmologist. regular eye doctors are good but neuro's are AMAZING. I too was pain free for my ON, and neuro opthalmologists are specialized in neurological disorders that can affect the eyes. They also perform more specific and frequent testing on you. My neuro-opth said to give him a call to be seen any time anything happens with my eye. They see these neuro disorders all the time so they have more experience.

          Also, MS does more to your eyes than just ON, so its important to see an eye doctor regularly. Also, with some insurances, the neuro-opth is considered medical not falling under vision insurance, which can be helpful.

          Comment


            #6
            I am of a different opinion...so please don't blast me. My Neuro trumps every doctor I have...period. Any Opthamologist can correctly diagnose ON, and if they can't they should not be licensed. If they panic, they should not be licensed. The problem with Opthamologists, is they normally do exactly what they did to you and prescribe oral steroids. What should have happened is your Opthalmologist should have called your Neuro and both of them come up with a game plan.

            Your neuro knew what the correct treatment was for ON...IVSM. If ON becomes a serious problem your neuro will refer you to a Neuro-Opthalmologist...I personally would not seek one out. I would ask your neuro for his recommendation, because it sounds like you have a good one and he has probably already developed relationships with certain Opthalmologists. Who knows...you might end up with a recommendation to a Neuro-Opthamologist at the same facility...win, win for everyone.

            Good Luck.
            Katie
            "Yep, I have MS, and it does have Me!"
            "My MS is a Journey for One."
            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

            Comment


              #7
              Having ON a number of times, my suggestion is just to get a good ophthalmologist (neuro trained not necessary). Next time see him or her first, get ON confirmation and then call your neuro to confirm you've been checked and obtain the proper treatment.

              Comment


                #8
                MSr102 - Thanks so much for your detailed response! After reading it I realize I did leave a few key details out, which support what you stated

                First, my neuro did ask me what dosage the opthamologist prescribed, and I read it off to him - he did comment before his laugh that had it been much, much, much higher it would possibly have been doable, but that it was much too low. I've since thrown away the script, but even with 300, I guess it was for the lower dose pill, and instructed to be taken/stretched over 5 weeks.
                (He also commented that "some docs do high dose oral pred now, in lieu of IVSM, but I'm still not 100% convinced that it is wise." So, he did state what you said, he just doesn't seem to do that as a course of treatment under his care. Preference I suppose?)

                Also, he reminded me that while I tend to do well with IVSM (seriously, I really have no negative side effects, and in fact, I sort of enjoy the positive ones), I do have some difficulty with oral prednisone. I don't think a high dose oral course would have been preferred my me even if it were an option.

                I didn't ask or wonder about breaking up the treatments or the total dosage, I just figured that is the way it is. But thank you MSer102, that's good to know for future IVSM I may need to have. I will certainly ask/mention it!

                KatieAgain - I do the same in regard to my neuro trumping all other docs. I worked hard to get him as a doc for various reasons, and I trust his word and knowledge. I do know there is a neuro-opthamologist office two offices down from the MS Center office where I see my doc. I'll call and just ask what they think!

                nicole - see above, I think I will check into seeing one at some point.

                PRose - that's exactly what happened this time, I just got the confirmation of the ON dx, and then placed that in my neuro's hands. (I just didn't like that optho!)
                "Now the sun is setting, getting ready for tomorrow. Soon the moon'll be glowing, showing off the moonlight. Take a look above you, discover the view. If you haven't noticed, please do. Please do. Please do." - Kermit

                "I'm through accepting limits, because someone says they're so, some things I cannot change, but til I try I'll never know...I'm defying gravity, and you can't pull me down!" - Elphaba, Wicked


                First Symptoms - 9/05
                Officially DX'd RRMS - 11/14/05
                Rebif - 12/18/05

                Comment


                  #9
                  The difference between the several general ophthalmologists I saw and my neuro-ophthalmologist is the general ophthalmologists didn't do the full battery of tests. Their mode of operation was to get the patients in and out as fast as possible. They didn't do visual field tests regularly, no color tests, no contrast sensitivity tests.Those things might not be so important after one episode of ON but they get more important in documenting what's going on with someone who has several episodes and has permanent losses of vision. My general ophthalmologists didn't want to have to do all of that so one of them finally sent me to the neuro guy. Thank goodness because he's fantastic!

                  Comment


                    #10
                    My entry into the world and health care system of MS was via my neuro-opto, who diagnosed the ON and is excellent. I also have a neurologist who is top-tier, but I would not do without my neuro-opto. His expertise is up to the minute (at least it seems to be, given what I have read and found out on my own).

                    He prescribed IVSM for three days, citing the study others have mentioned, plus some follow-up data. I did the tapering. Yuck.

                    It's been more than two months, and I still have residual "greying" in the eye, and the odd flash, usually at night, but my vision has recovered dramatically. I had severe pain with my ON, and while that has pretty much gone, I still get localized headaches on that side when I am particularly stressed or tired. If they don't recede within another month, then I will see him again, before the scheduled follow-up visit, and I like that I can do.

                    Comment


                      #11
                      Just an update for anyone who is looking for ON story examples. I know I know, everyone is different, MS varies widely, yadda yadda yadda, but still I know when I read someone's story about whatever MS flare and then folks chime in with advice and support, and we get a few updates, and then BAM! They disappear, and it is like WHAAAA? What happened? How did it all end up?? TELL ME!

                      It's like when shows end on a cliffhanger and then get canceled. Worst. Feeling. Ever.

                      Anyhoo, so here I am today marks exactly 12 weeks since I woke up with a wonky eyeball. And.... drumroll....

                      Still wonky.

                      Lately, I actually feel like it's gotten worse, but maybe it's all in my head (see what I did there? Ba dum dum! lol). When I leave work and walk into the sunlight, I notice it immediately - everything in that eye is whitewashed. Still has that frosted window look to everything.

                      Went to the neuro-opthamologist two weeks ago. Did a bunch of tests, read the chart, had a visual field test and an OCT scan. I was able to read much of the eye chart, BUT I had to WORK at it. I mean really study each letter and then guess based on overall shape. I got lucky on most of them. But just looking up and trying to read it without "thinking"? Forget it. Same thing with reading stuff around the house, or sometimes at a red light when I shut my good eye and try to read the license plate in front of me. I CAN, but boy is it like learning to read all over again. Most words (like street signs) I can figure out, but only because I use context clues or intuition. (I'm sure that sign says MAIN ST. not MYTX GW.)

                      OCT scan "showed that nerve took a definite hit", but that my nerves show no sign of thinning and overall look healthy. Harumph! Neuro-opthamologist says it's still early, and that based on her experience she won't consider my recovery possibility "over" until the 6 month mark.

                      Following up with her Nov 21st, but at this point, I am trying to just accept that this could be it.
                      "Now the sun is setting, getting ready for tomorrow. Soon the moon'll be glowing, showing off the moonlight. Take a look above you, discover the view. If you haven't noticed, please do. Please do. Please do." - Kermit

                      "I'm through accepting limits, because someone says they're so, some things I cannot change, but til I try I'll never know...I'm defying gravity, and you can't pull me down!" - Elphaba, Wicked


                      First Symptoms - 9/05
                      Officially DX'd RRMS - 11/14/05
                      Rebif - 12/18/05

                      Comment


                        #12
                        I was able to read much of the eye chart, BUT I had to WORK at it. I mean really study each letter and then guess based on overall shape. I got lucky on most of them. But just looking up and trying to read it without "thinking"? Forget it. Same thing with reading stuff around the house, or sometimes at a red light when I shut my good eye and try to read the license plate in front of me. I CAN, but boy is it like learning to read all over again. Most words (like street signs) I can figure out, but only because I use context clues or intuition. (I'm sure that sign says MAIN ST. not MYTX GW.)
                        Oh, how I understand! My former neuro was getting really grumpy with me for not reading an eye chart quickly enough, and I told him it takes a second for the letters to stop wiggling and so I can see them sort of clearly. I'm a writer by trade, I promise I can read, but can only do so much with the limitations of my vision. And yes, the street signs! Exasperating. I have the kids read them to me sometimes because they can see them first.

                        I hope you have more healing and your vision improves some more. Thanks for keeping us posted!

                        Comment


                          #13
                          MS and optic neuritis treatment

                          Hello! I am an ophthalmologist. Just wanted to chime in.

                          I think that your neurologist seems very well qualified to manage optic neuritis. Neuro-ophthalmologists, however, have the advantage of being a neurologist who can do a detailed eye exam. A large benefit of seeing an ophthalmologist is to find out if you have possibly ANOTHER reason for fluctuating vision so that you do not receive unnecessary treatment.

                          Also steroid medications can sometimes significantly increase intraocular pressure so whenever you receive them, you will need to be followed closely by an ophthalmologist just to make sure you do not get a spike of intraocular pressure and if you do that it is managed. Otherwise a pressure spike can significantly damage your optic nerve further.

                          As for neuro-ophthalmology vs. ophthalmology, both should be able to treat you ok in conjunction with your neurologist. The only thing to consider is that neuro-ophthalmologist IS a super-specialist and also that neuro-ophthalmologist can manage your episodes of optic neuritis alone whereas if you followed with a neurologist you will NEED to follow with an ophthalmologist as well first of all to confirm the diagnosis, second of all to rule out other causes of vision loss, and third to make sure you do not get the intraocular pressure spike.

                          A very significant and concerning pressure spike can happen even with low dose steroids. Hope this helps

                          ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

                          Comment


                            #14
                            Acthar for ON?

                            I have ON also. It was the first solid indicator of MS and led to my original diagnoses in '03. In the last 12 months I have had 2 exacerbations and each time my (new) Neuro had me go on a 5 day regime of a drug called Acthar. It is a synthetic hormone that causes the adrenal glands to start pumping out large amounts of the body's natural steroids. Since they are being produced by my body, there are no withdrawl issues.

                            It works very well, but comes at a hefty $30k for a 5 day treatment. I was blessed to find a organization called the Chronic Disease Fund which covered all of the co-pays.

                            If you have a bad flare up or a new exacerbation you might want to ask your neuro. It sure beats spending a week in the hospital!

                            Comment


                              #15
                              Acthar is good but not necessarily better than synthetic steroids. Almost nobody goes to the hospital for ON anymore. Almost everyone does their IV's in a clinic or at home. Acthar is injected so people who are afraid of needles will be afraid to inject it. Some people are doing their high dose steroids with oral medications now so they're almost dirt cheap and easily accessible and bad veins isn't a problem.

                              Acthar might be a fine choice for a serious flare that causes mobility problems so bad that a person needs to go in the hospital but there doesn't seem to be any advantage for ON. $30,000 or even its percentage copay is a lot of money to spend for an episode of ON which ends up the same whether it's treated or not.

                              Comment

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