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    Optic Neuritis-how long did yours last?

    Hi. I'm new here....

    I just got diagnosed two weeks ago and haven't started any medication yet. I have had optic neuritis (visible on MRI) for 3 weeks now. I did five days of solu-medrol which in finished 4 days ago. My eyes are still not right. I'm supposed to start a new job in 11 days and I'm worried about how I'll be feeling by then.

    Can anyone share their experiences with me about how long your flare was and what I can expect? I just moved states and my first neurologist wasn't very helpful with sharing what my prognosis could be.

    Thanks.

    #2
    How long optic neuritis lasts depends on a person's definition of optic neuritis and unfortunately a LOT of people misuse the term.

    That's important because there's a difference between how long the inflammation of optic neuritis lasts - which is the correct definition - and how long the effects of MS last. A lot of people misuse the term ON to mean the after effects and not the episode itself.

    "Neuritis" means "inflammation of a nerve" so the term is used correctly only while the optic nerve is inflamed. It doesn't mean damage to vision that's left over after the inflammation is gone. And I say that's important to know because so many people say things like "my ON is really bad today" or "working on the computer bothers my ON". If you don't understand that the term is being used incorrectly there it can be confusing about what is going on with your own vision while and after you have ON.

    In MS active inflammation usually lasts a few weeks. For some people it's only a couple of weeks and for some people it's about 6 or maybe 8. My ophthalmologist told me that doctors know that because of how long lesions take up contrast dye and are "active" on an MRI and by the amount of time that many episodes of ON and other attacks get better.

    I've had several episodes of ON. Not one of them showed any improvement before 3 weeks. For the vision I got back I got most of it back at about 6 weeks. I think it's interesting that that goes along with the amount of time that my doctor said that most attacks of ON and double vision get better. Some of the recover has taken longer but since my 3rd episode (my worst) there is vision I don't get back. So after several episodes I have lost a lot of vision permanently. My doctor said that that's not uncommon after several episodes because of accumulated damage. But it only takes 1 episode of ON to permanently take vision.

    The Optic Neuritis Treatment Trial was a big long study about ON. The results showed that most people who have ON get most of their vision back. Some people get it all back and some don't get much or any of it back. Even though most people got most of their vision back I think most of them had leftover deficits of some kind - enough to be noticable but not enough to cause problems. I don't know if the study said anything about how long it took most people to recover what they got back.

    There are a couple of other things to know about steroids for ON. First, the Optic Neuritis Treatment Trial showed that steroid treatment makes no difference to the final outcome of ON. The outcome is the same whether it is treated or not. The steroids were found to shorten the duration of the episode and help vision to recover faster (if it's going to).

    The second thing to know is that steroids only suppress inflammation so the nerve can heal. They don't heal anything and vision does NOT return right away like an aspirin relieves a headache. Even with steroids it can take weeks or even months for vision to return. I've heard that on rare occasions a person's vision recovers in about a week but my ophthalmologist warned me not to expect that or to think that there was anything especially wrong because mine doesn't do that. So I think you should be careful not to expect that either. My doctor would tell you that 3 to 6 weeks is much more usual.

    I said there are 2 things to know but there's one more. The steroids themselves can make your vision blurry. For some reason that doesn't get put on the list of side effects. But if your other eye is a little blurry too it could be because of steroid side effects and it should get better in another week or 2 as the steroid side effects wear off.

    After my first couple of episodes of ON I was able to go back to work after 2 weeks. I didn't take time off because of the ON - I took time off because the side effects of the steroids knocked me for a loop! After 2 weeks the side effects had worn off and my other eye had cleared up enough that I could drive and go back to work.

    If you don't start your job for another 11 days then that will be about 2 weeks after your steroids so you should be feeling better from the steroids by then. Your vision might not have returned in your ON eye but you might be feeling well enough to start the job.

    As someone who has been through ON several times my best recommendation to you is that - as long as your non-ON eye is seeing normally and your job doesn't depend on you having perfect vision in both eyes - you should start you job as expected and don't say anything to anyone about your ON or your vision or MS diagnosis no matter how uncomfortable or freaked out you feel by being in an unfamiliar situation and not able to see normally. There's no reason anybody at work needs to know and they won't if you carry on as normally as you can.

    Right now you are only 3 weeks out from your episode of ON and it's too soon to say anything because the expectation is that you will recover most of your vision. So again unless your new job relies on you having good vision in both eyes and you can't do it then you won't gain anything by saying anything about it. And regardless of what the Americans with Disabilities Act says, starting off by letting people know you have been unwell or have temporary effects from a health issue won't inspire confidence in you or your abilities.

    I think that most people will say that the time to disclose your MS and any effects you are having from it is when you need to ask for reasonable accommodations to do your job. Up until then anything you say can and will be used against you in the workplace. Sorry but that's how it is for most people. For now it's too early to say anything.

    So take it easy for the next week or so. I wish you all the best as you recover from you ON and start your new job.

    Comment


      #3
      I had optic neuritis in both eyes at the same time which I guess is pretty rare, and can confirm is very scary. My neurologist told me to do balance exercises to help the recovery so I stood in a door frame and alternated balancing on one foot. I don't know if it was hokum advise but with that and the steroids I went back to normal vision in several weeks. Good luck!

      Comment


        #4
        Thank you so much for your advice. I've been feeling pretty alone for the last few weeks and I didn't know who to ask. My vision is actually pretty good, but it's the pain of moving my eyes and a "bouncy" feeling when I walk that sucks. My new job will be somewhat physical and I'll have to drive as well, which is also why I'm nervous. I have never had this kind of "out of body" experience before....where I feel so disconnected. It's so weird.

        I am hopeful that I'll continue to feel better...and I have to keep telling myself that I will...life has to go on and I'm ready for it. One thing at a time. I'm forcing myself to not start researching the drug side effects yet so I can get over this hump first.

        Comment


          #5
          Hi Roamer, you're in good company here, lots of advice and compassion on this site but sorry for the reason you had to find us.

          Re your ON question, unfortunately there is not a "standard" amount of time until it goes away. You mentioned that you just finished 5 days of steroids, which is important as they aid in reducing inflammation of the Optic Nerve. A lot of those annoyances you're experiencing is a direct result of the inflammation so the sooner it can be reduced, the better.

          Chances are, if your vision is pretty good right now, the other symptoms will improve, but there is no guarantee on when. If you were on the usual 1,000 mg of IV steroids, it's a dangerously high dose but keeps working long after the IV is finished.

          I've had things improve within a few weeks (right eye) to permanent complete loss of sight (left) so you can see why I couldn't give you a good estimate of time.

          If, in a few days, there's no improvement at all, it wouldn't hurt to let your doc know. Lots of times we get an oral dose which tapers us off the IV, he/she may recommend it.

          Sorry I couldn't be of much help to give you answers but hopefully you'll improve quickly. Which med is your doc recommending? Good luck with your new job!

          Jen
          RRMS 2005, Copaxone since 2007
          "I hope to be the person my dog thinks I am."

          Comment


            #6
            Originally posted by Roamerwithroots View Post
            My new job will be somewhat physical and I'll have to drive as well, which is also why I'm nervous.
            I can appreciate that. That's why I said unless your new job requires you to have good vision, carry on as usual. That's one thing if you are going to have a desk job or something that isn't primarily physical or visual.

            But if your new job does require that you might have to be prepared to do something else. Will you have to have a physical exam before you start work? Is driving going to be part of your job? Will you have to take a vision test first? The good news is that you still have another week to recover so everything could take care of itself by then.

            As for an oral steroid taper after your IV series, you don't need to be concerned if you didn't have one. There was a study done a few years back that showed that there is no medical benefit from an oral taper after treating an MS flare. My doctor told me that the idea of a taper is decades old and came from having to taper people after they had been on steroids for weeks. A taper isn't usually needed even after high dose steroids if you've only had them for a few days and it hasn't been found to be needed for MS.

            You've already had 5000 mg of Solu-Medrol. 500 mg more of an oral steroid isn't going to make any medical difference and it probably isn't going to be the "magic bullet" that speeds up your recovery any faster. It might even do the opposite by making you feel terrible for another week! I haven't done an oral taper in years and I'm glad. I found that it only prolongs the agony of the steroid side effects. And remember that more steroids won't make any difference to the final outcome of your flare anyway. So it's OK if you didn't have a taper.

            Please do try to relax during the next week. And good luck with the new job.

            Comment


              #7
              My first neurologist in the state I just moved from didn't give me an oral taper, because he said it wouldn't really help. I'm okay with that now because damn, getting over the steroid withdrawal made everything feel even worse. Yuck!

              I am feeling a tiny bit better every day...mornings are worse for me by far though.

              The doc told me about tecfidera but I'm horrified by the side effects I'm reading about. I'm hoping to get in to see a new doc next week or the week after and will make an informed decision then. Any advice?

              Also, how do I know if I need to see a neuro-opthamologist vs a regular neurologist? Does it matter?

              Thanks again, everyone.

              Comment


                #8
                Originally posted by Roamerwithroots View Post
                Also, how do I know if I need to see a neuro-opthamologist vs a regular neurologist? Does it matter?
                Yes it does matter because with rare exception they are 2 different specialties.

                A neurologist is the full-body nervous system specialist. This is the specialty that treats diseases of the nervous system including MS. Their specialty includes some basic understanding of how the eyes and brain work together from a neurology standpoint.

                But they aren't trained or equipped to examine the eyes. I've been to many neurologists and I've never seen a single one with a visual field testing machine or more than a basic eye chart and the same eye examining instruments as every general doctor. Neurologists are not the profession to see if there's anything wrong with your eyes or vision. They prescribe steroids for optic neuritis or diplopia but they're kind of doing it in a vacuum because they don't have the equipment to test or document those problems in the same way an ophthalmologist does.

                For the most part a neuro-ophthalmologist is an ophthalmologist who has chosen to specialize further in how the eyes and brain work together and how problems with the optic nerves and brain affect vision. But they are still ophthalmologists and can do a full eye exam and determine if blurry vision is coming from, say, inflammation at the front of the eye, a problem with the retina or a problem with the brain or brainstem. They have a lot of specialized testing equipment that only other ophthalmologists - even general ophtalmologists and optometrists - have

                Neuro-ophthalmologists don't treat general neurology problems and refer to neurologists for that. Neuro-ophthalmologists don't treat MS because that's a systemic disease. There aren't enough neuro-ophthalmologists to go around for them to spend time doing something outside their specialty.

                There's an exception to all of that. There are a few neurologists who have a special interest in how the eyes work with the brain and call themselves neuro-ophthalmologists. For the most part though they are not ophthalmologists and can't do full eye exams.

                There are a very few who actually have gone through 7 years of ophthalmology residency and another 7 years of neurology residency and call themselves neuro-ophthalmologists. They are few and far between. Personally I can't imagine how anyone would even want to do that. A person can only be really good at one thing. Since I have an excellent neuro-ophthalmolgist I know how complex their profession is and I would never ever trust a neurologist who tried to do ophthalmology or vice versa.

                With MS you absolutely must have a neurologist. An MS specialist is probably better than a general neurologist - again because of the time and expertise required to do something well - but there are also many general neurologists who happen to see a large number of MS patients who are very good at it. But whether you see a generual neurologist or an MS specialist you have to have a neurologist.

                One episode of optic neuritis doesn't mean you need a neuro-ophthalmologist but you should start seeing an ophthalmologist if you haven't already. It's a very good idea to have good baseline information about your eyes and how they're working in your medical record. Your neurologist doesn't have any idea if your vision is blurry because of ON or just because you need glasses or because of something else. The ophthalmologist's job is to figure out why. An optometrist can actually do most of that and better than most people think but they still need to refer to ophthalmologists for systemic medical problems so you might as well just deal right with an ophthalmologist.

                A neuro-ophthalmologist is a good idea if you have another episode of optic neuritis or if you develop double vision. And some people with MS are prone to repeat episodes of those so it's a good idea to have a specialist who already knows you and can test and document those episodes properly. My neuro-ophthalmologist treats all of my eye stuff and I don't even tell my neurologist about it until my follow up appointments. In fact I've been through several neurologists over the years and not a single one of them even understood vision and eye stuff!

                Most neuro-ophthalmologists take patients only by referral so if you want to see one it would be a good idea to ask your neurologist or ophthalmologist for one at your next appointment. It can take months to get in to see a neuro-ophthalmologist for a "routine" appointment so it might not hurt to start working on it now.

                So I would say that you need both a neurologist and either an ophthalmologist or neuro-ophthalmologist. One specialty is not a substitute for another.

                Comment


                  #9
                  Oop! Forgot to mention, either a neuro-Opth, a regular Opth, even a basic optometrist, can take a digital picture of your eyes. Not the optic nerve, just the eyeballs. Its good to have on file, especially if you're just starting out.
                  Jen
                  RRMS 2005, Copaxone since 2007
                  "I hope to be the person my dog thinks I am."

                  Comment


                    #10
                    Originally posted by Roamerwithroots View Post
                    My first neurologist in the state I just moved from didn't give me an oral taper, because he said it wouldn't really help. I'm okay with that now because damn, getting over the steroid withdrawal made everything feel even worse. Yuck!

                    I am feeling a tiny bit better every day...mornings are worse for me by far though.

                    The doc told me about tecfidera but I'm horrified by the side effects I'm reading about. I'm hoping to get in to see a new doc next week or the week after and will make an informed decision then. Any advice?

                    Also, how do I know if I need to see a neuro-opthamologist vs a regular neurologist? Does it matter?

                    Thanks again, everyone.
                    There are a lot of people in my Support Group taking Tecfidera and are doing fine on it. All the drugs have side effects, but you never know how you will truly react until you take it yourself. I personally know of at least 3 people that had zero side effects, several had side effects but have now gone away, and one that was so sick she had to go to the ER to get hydrated.

                    We had one who had their first MRI come back, no new lesions, no progression...a positive sign.

                    Alot of times people that are doing well on a drug don't post.
                    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


                      #11
                      Originally posted by MSer102 View Post
                      As someone who has been through ON several times my best recommendation to you is that - as long as your non-ON eye is seeing normally and your job doesn't depend on you having perfect vision in both eyes - you should start you job as expected and don't say anything to anyone about your ON or your vision or MS diagnosis no matter how uncomfortable or freaked out you feel by being in an unfamiliar situation and not able to see normally. There's no reason anybody at work needs to know and they won't if you carry on as normally as you can.

                      ... And regardless of what the Americans with Disabilities Act says, starting off by letting people know you have been unwell or have temporary effects from a health issue won't inspire confidence in you or your abilities.

                      I think that most people will say that the time to disclose your MS and any effects you are having from it is when you need to ask for reasonable accommodations to do your job. Up until then anything you say can and will be used against you in the workplace. Sorry but that's how it is for most people. For now it's too early to say anything.
                      Roamerwithroots: MSer102 has given you excellent advice regarding disclosure.

                      I hope the positive effects of the solu-medrol steadily improve your vision to 100%.

                      Good luck with your new job,
                      Bree

                      Comment


                        #12
                        My diagnosis of MS began with an episode of painful and severe ON. I did high-dose IV steroids and I was back to work after two weeks, though I probably should not have been, as the pain and vision issues continued for a while. While not constant, they would recur regularly. I was able to do my job, but it was not comfortable, and I was exhausted, which likely didn't help. It wasn't until about the third month that I felt it was majorly improved, but it does still bother me now, so I don't think it ever really went away in me. But, it's manageable, unless I have a very bad day with lots of stress and computer time (or a hot bath -- avoid at all costs; found out the hard and debilitating way).

                        Good luck with the new job. I would tend toward keeping it to myself, especially given it's an unknown environment.

                        Oh, and re. Tecfidera: have been on it about two-and-a-half months. Side effects were not fun, but they did go away (as long as I make sure to take the pills right after I finish eating), and for me, I'd rather be on this than nothing at all, though it is somewhat dispiriting that there is no way to know if it is working.

                        Comment


                          #13
                          Thank you everyone. I finally felt well enough to drive to whole foods yesterday....I hadn't driven in a few weeks. So that is saying something. I've decided to see how I feel in a couple of days and then decide if I can start my new job a week from today. The timing couldn't really have been any worse.

                          I went to an opthamologist before I went to the neurologist; he sent me for the MRI that day when he saw that my eyes werent tracking properly. It's good that I have that report already. I found out that the way the new university hospital system that I'll be going to works is that they get the referral from my old doc and then assign me to a neurologist. So I'm assuming if I need a neuro-opthamologist that they will assign me to one based on my records.

                          Thanks for the medication advice too....I realize reading these stories is a lot like reading hotel reviews. They are usually written by people who love or hate them....there have to be middle of the roaders too. I'm just not sure I have it in me to inject myself.

                          What a journey.

                          Comment


                            #14
                            Glad to hear that you are feeling better!

                            Originally posted by Roamerwithroots View Post
                            I've decided to see how I feel in a couple of days and then decide if I can start my new job a week from today. The timing couldn't really have been any worse.
                            Unfortunately, that's what life is. You know the saying: Life is what happens to us while we're making other plans.

                            And that reminds me of another saying: MS is not for wimps. What I found is that I had to shift my thinking from "woe is me" to "oh yeah? - bring it on". You can't always control what happens to you but you absolutely can control how you respond to what happens. So I think it's better to learn how to respond in a way that makes you strong instead of a way that makes you weak and helpless. So far it sounds like you are doing OK.

                            As far as the medicines for treating MS go there are roughly 2 categories. There are the injectible medicines (called the CRAB drugs) that on the whole have less serious side effects but not high effectiveness (low risk but low benefit). The other group is the oral and infused medicines that on the whole have more serious side effects but higher effectiveness (higher risk but higher benefit).

                            It's hard to know in advance who will get which side effects or how bad they will be so - as simple as this sounds - you really just have to learn as much as you can about each medicine and then make your best choice based on that. Before you pick, your doctor will know if you shouldn't take a particular one based on your health history so you can take it off the list. But then you start with your best choice and see what happens. If everything goes well you can stay on it. If everything doesn't go well you can change to a different one. With Tysabri it's a bit more complicated, but for the orals and injectibles that's pretty much how it goes.

                            If you don't like the idea of injections (the injectibles have the lowest effectiveness) you still have the oral medicines and maybe Tysabri to choose from. All of the medicines have possible side effects that are pretty scary. But other than being able to eliminate one because your medical history already shows it would be bad for you, you can't know if you are going to have bad side effects until you take it. And if you want to get something you have to risk something.

                            So if you decide to take one of those medicines you have to be ready for just about anything without being worried or frightened about it. I think that if you are more afraid of the treatment than you are of the disease then you shouldn't take it.

                            But overall I think that this is one of the times where "woe is me" isn't helpful but "bring it on" will give you the courage to try something scary and be proactive in treating your MS. I wish you all the best with whatever you decide to do.

                            Comment


                              #15
                              Why do I now feel like I have the worst sinus headache in the world? I can't tell if this is the same or different from the ON flare I've been having for over 3 weeks now.... My sinuses are aching and it doesn't seem to be related to eye movement. Is this normal?
                              Ugh.

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