Multiple Sclerosis & Vision: Eugene F. May, M.D. - July 2020

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hello everyone and thank you very much for joining us we appreciate you all being here today for this presentation our presentation today is by dr eugene may on multiple sclerosis and vision i'm your host casey minis director of communications for the multiple sclerosis foundation and we appreciate you joining us for this special occasion let me introduce our speaker to you our speaker dr eugene may is a neuro ophthalmologist at the swedish neuroscience institute he sees patients whose visual symptoms are or may be due to neurologic problems many patients with multiple sclerosis as you probably know have vision problems so a big part of dr may's practice is dedicated to helping people with ms understand what is causing their vision problem and what can be done to address it dr may also has a special interest in diagnosis and treatment of neurologic vestibular disorders patients with neurologic vestibular disorders have vertigo dizziness and imbalance they frequently have seen multiple providers before coming to him for an explanation of their symptoms his main goal is to diagnose and treat these conditions so people feel better and function better we're very happy to have him with us today and dr may i turn it over to you well thank you very much casey i appreciate the invitation to uh give this talk and uh it's something that i hope is going to be helpful for everyone who is attending today i know that some of you guys are um very experienced with ms and know a lot about ms and know a lot about ms and vision but i suspect that there are also some people on the call who don't know a lot about ms and vision and so what i hope to do is just give everybody just a pretty broad overview about uh how ms can affect vision and all the different ways that it can affect vision at all different levels so that everybody gets something out of it and i'm really looking forward to being done talking myself and hearing what your questions are and answering them so that i can really get to the root of what you need to know about this topic so as you know ms is a condition that causes inflammation in various places in the central nervous system sometimes ms causes inflammation and doesn't cause any symptoms at all but if inflammation from ms does cause symptoms then invariably the symptom that results is due to the location in the nervous system that the inflammation occurs and that's something that we're going to be remembering and the effect that we're going to be using when we try to understand what happens in people with ms when they have inflammation in the visual pathways of the nervous system and in the eye movement pathways as well when ms causes inflammation in the optic nerve the condition that results is called optic neuritis and we'll talk a lot about optic neuritis when ms inflammation occurs in the base of the brain and the brain stem or in the cerebellum it causes eye movement problems because that's the part of the brain that controls eye movements we'll talk about different syndromes of eye movement disorders in ms as well and finally we're going to spend a little bit of time talking about what we call the msi clinic and that's where we as a group of neuro-ophthalmologists see people just with ms and concentrate on what's going on with their eyes and in particular use a tool that's available these days called oct and i hope to give you a little bit of insight into what oct is and how that helps us assess people with ms currently so just as a reminder again i know a lot of you are overly familiar with this but ms predominantly causes what are what's called relapses and that's when there is inflammation in the nervous system when a person with ms has an overactive immune system causing inflammation in the nervous system that causes a relapse and a relapse is a symptom that comes on pretty much out of the blue and then peaks usually over the course of several days or a week and then gradually gets better most people recover from relapses a lot of people recover completely from relapses some people recover just partially from relapses when people have the form of ms that just causes relapses we call that relapsing remitting ms and a number of the syndromes that we're going to be talking about today are syndromes of ms relapses that affect the visual pathways the other forms of ms though involve progression where people's symptoms or findings get worse over time whether or not they're having relapses secondary progressive ms is the kind of ms where people have relapses but at some point their condition worsens there's a form of ms called primary progressive ms where relapses never really occur uh what people with primary progressive ms experience is worsening of their problems over time some of the conditions that we're going to be talking about today with the visual sim system uh are seen in progressive forms of ms that is that they do not occur as a relapse they come on and then often get worse over time and i'll try to be clear whether i'm talking about a relapse or a progressive type of symptom so if i were to take a survey of all the people on this call the odds would be that the majority if you have ms that the majority have had optic neuritis and i bet that most of you guys know what optic neuritis is it is by far the most common relapse symptom of ms up to half of people with ms present with optic neuritis meaning it's their first symptom of ms and if you look at all comers with ms over the entire course of their disease then it occurs in up to 80 percent of all people with ms super super common when people get optic neuritis it's an ms relapse typically manifested by vision loss in one eye sometimes both eyes are involved but usually it's one eye and there's this characteristic pain that occurs it's behind the eye and it gets worse with eye movement so if you see a young person who's got no medical problems or neurologic problems comes in with vision loss in one eye pain on eye movement you can almost tell just by talking to them that they have optic neuritis and immediately the suspicion is going to be there that in fact this may be their first symptom of what turns into multiple sclerosis when people develop optic neuritis their difficulty with vision can vary significantly this table shows that 10 of people who have optic neuritis still have 20 20 vision meaning their visual acuity is normal but most people with optic neuritis are in this kind of middle group where visual acuity is somewhere between 2050 which is several lines off of normal on the vision chart down to 2 800 which is worse than being able to just see the big e and then a minority of patients with optic neuritis have really poor vision in the affected eye when eye doctors talk about this level of vision count fingers hand motion light perception no light perception this means with count fingers that the patient can't see any of the letters on the chart but they can count fingers that are put right in front of them hm is hand motion they can't count fingers but they can see a hand move lp is light perception they can't see a hand move but they can see when a light is on or off and then finally nlp or no light perception meaning no matter how bright a light you shine in the affected eye the patient can't see it you can see that's a minority of patients with optic neuritis but some with optic neuritis really do at the worst of the optic neuritis have a pretty bad vision in the affected eye other than just an impairment of visual acuity or difficulty focusing there are other aspects of vision that are affected with optic neuritis one is color vision we test color vision with these color plates it's really common for people with optic neuritis to have difficulties determining colors in the affected eye particularly the reds but sometimes the green and blues are affected as well people get visual field defects anyone who's had optic neuritis has probably had a visual field test that's the test where you sit and look in the bowl and little lights flash and you have to press a button every time you see the light visual field tests show us that people have what are called scotomas or visual field defects and that is areas in their vision where they can't see and then finally there's testing that we do sometimes for contrast sensitivity and this is a contrast test chart that you can see contrast sensitivity is a subtle visual function that is the ability to determine differences between shades of white and black and gray you can see in the highest contrast test plate down here there's really fine definition between dark and light and as we move to the right the contrast goes down so you can see it gets a little hazier it's not quite as distinct less hazy here i mean less distinct here less a distinct here and as the contrast goes down it's harder and harder to see what direction these lines are going and it's really common in optic neuritis that people have a lot of difficulty with contrast sensitivity and we'll talk about that again in a minute when we talk about how people recover when a doctor looks in the eyes of a person with ms who's having optic neuritis or someone who's presenting with optic neuritis sometimes the optic nerve looks normal this is the way the optic nerve looks in the back of a person's eye when there's no abnormality at all you can see that they're nice is a nice distinct margin around the edge of the optic nerve as it kind of flays out onto the retina that when people with optic neuritis have a normal eye exam we say they're having a retro bulbar optic neuritis and that means that the inflammation in the optic nerve is occurring behind the eye and because it's occurring behind the eye the eye itself looks normal and a lot of people with ms or who had optic neuritis have probably had the experience of going to an eye doctor and being told well your eye looks normal you're fine don't worry about it whereas in fact the eye looks normal because the problem is behind the eye and that's a retrobulbar optic neuritis some people with optic neuritis have actually a swollen optic nerve i don't know if you can appreciate this but you see how blurry the margins are of the optic nerve in this slide on the right whereas here you have that nice distinct round edge of the optic nerve so this is a swollen optic nerve the inflammation is occurring right where the optic nerve enters the eye and you can see the swelling you can see the inflammation so that's an anterior optic neuritis and that's a lot easier to diagnose than a retro bulbar optic neuritis most people though with ms who get optic neuritis get retro bulbar optic neuritis and their eyes going to look totally normal when they may have a real significant impairment of vision so what happens after you have optic neuritis well most of you will probably have experienced that the pain goes away first it's usually worse for about 10 7 10 days or so and then goes away it takes longer for the vision to improve but in almost every patient with optic neuritis vision improves significantly and in up to 90 percent of people with optic neuritis vision gets back to normal so fortunately like with a lot of other ms relapses when the inflammation goes away the nerve gets a chance to heal and vision gets back to normal again but as you can tell 10 to 15 percent of people who have optic neuritis do not get vision back to normal and some are left with mild moderate or significant vision loss after experiencing optic neuritis fortunately that's least common well i put a little picture here at the bottom of this slide of the optic neuritis treatment trial if any of you guys have been around as long as i have you may have been a part of the optic neuritis treatment trial which was a study back in the late 80s and the early 90s which was the first time that we neuro-ophthalmologists really had an opportunity to study what happens when people get optic neuritis what are the outcomes and how do we treat it it was the first study that really showed definitively what the benefit is of using steroids in ms relapses or optic neuritis and the thing that we learned through the optic neuritis treatment trial and still really has impact on how we practice today is that when you treat optic neuritis or if you treat an ms relapse you can't use low-dose steroids you have to use high-dose steroids and that's why a lot of people when they have optic neuritis or an ms relapse they get intravenous steroids you get the gram of methylprednisolone or salimedrol a day for three days we're now using high-dose oral steroids i frequently am giving my patients now 1250 milligrams of prednisone a day for three days so that they don't need the iv treatment they can just take a whole bunch of pills at home it is a lot of pills but it frees you up from the iv and it frees you up from having a home health nurse or going to the infusion center what we learned from the optic neuritis treatment trial and what is still probably true is that using steroids to treat optic neuritis probably does not change the visual outcome so a person with optic neuritis is destined to have a certain visual outcome whether or not they're treated with steroids what we have learned though is that using steroids really speeds up the recovery of optic neuritis so if your symptoms are bad enough if the pain is bad enough or if the vision loss is bad enough that it's really impacting your quality of life or your function then using steroids will really hasten your recovery and shorten the period of time that you're having problems with optic neuritis so we do use steroids to treat a lot of people with optic neuritis but we don't treat everybody some people would rather not bother with the steroids some people hate the steroids and would not take them under any circumstances and that's okay because we know that the outcome is going to be the same probably whether or not we give steroids so you know case by case we decide whether or not to treat a case of optic neuritis with steroids but the important thing is always using high dose there is some data that treating optic neuritis may delay the next attack of ms but this data was generated before ms disease modifying therapies were in general use so may not have a lot of utility these days so what about long term well after people recover from optic neuritis even if you go to your eye doctor and the eye doc says well you're seeing 20 20 your vision must be normal most people with optic neuritis are going to say you know it may be 20 20 but it's still not right something is just not right and that is because when you go to your eye doctor they don't measure your contrast acuity it's that low contrast vision that's impaired even after you recover from optic neuritis we in our clinic test low contrast vision because that's kind of our job we see people with ms with optic neuritis but your regular doc isn't going to pick up on that so even if you recover and your vision is 20 20 if it if in your mind's eye literally you say well i'm not still not seeing right there's a bit of a haze or come some sort of uh veil in front of what i'm seeing that is because contrast acuity usually doesn't get back 100 but in spite of that vision is good enough that you can drive you can read you can do your work it's just still not quite normal in a lot of cases after a person recovers from optic neuritis if their vision doesn't normalize glasses don't fix the problem glasses are really only to fix the type of visual problem that occurs related to the shape and size of the eye so nearsighted people for example have big eyes far-sighted people have small eyes people with astigmatis astigmatism have kind of a funny shape of the eye and that is all fixable with glasses but the blur that results from optic neuritis is not fixable with glasses however you still want to see your eye doc you still want to get the best pair of glasses possible to focus the best possible vision that you have even in spite of having had optic neuritis acutely when a person is in the midst of developing optic neuritis they sometimes feel more comfortable if they patch the affected eye because out of the blue if you suddenly develop real blurred vision in one eye compared to the other that can be disturbing to the brain and your sense of equilibrium and depth and it sometimes helps just to kind of cover the impaired eye and wait for it to get better over the long term though we encourage people to use both eyes as much as possible so that your brain kind of gets used to the difference between your eyes and that may take up to a year or more after optic neuritis but your brain generally adjusts when one of the eyes vision has changed and starts using your eyes together again more effectively some people get light sensitive after they get optic neuritis and kind of shun light because it's uncomfortable and it's okay to wear shades or tinted lenses but keep in mind that after you've had optic neuritis you really want as much light as possible to see clearly and you don't want to wear shades that are too dark that make it harder for you actually to use your eyes and see some people with optic neuritis get a symptom it's called utops phenomenon i'm sure many of you guys are familiar with this it doesn't just happen with optic neuritis in ms it happens with a lot of other ms symptoms after relapses and uh i have the picture on the left of dr utoff here but on the right i have a picture of a optic nerve axon this is the part of the nerve cell that connects the eye in the retina to the brain and you can see that the optic nerve axon is covered by myelin that's that kind of fatty protective sheath that keeps the conduction down the nerve cell going as you probably know what happens with inflammation in ms is that the inflammation damages the myelin so that the nerve cell is exposed and when a nerve cell is exposed the conduction through the nerve cell slows down and that's why people with ms have persistent symptoms when the nerve cell slows down and in the case of the optic nerve it causes blur the thing about this slowing down of the conduction with a nerve cell that is demyelinated is that the speed of conduction is temperature sensitive under normal circumstances with a fully myelinated nerve it doesn't matter what your body temperature is that nerve cell is going to conduct impulses through the optic nerve without any problem but in a demyelinated nerve cell after optic neuritis for example if your body temperature goes up then the conduction through the nerve cell slows down even more so that's why people who have had optic neuritis if they get overheated for example when they're exercising or if they're in a hot tub or take a hot shower they may temporarily have even blurrier vision or worse vision until they cool down again and the thing to keep in mind it's not causing damage to the nerves when you get overheated and your symptoms increase it's a purely temperature related physiologic effect that will always go away when you cool down most people are not overly bothered by this although it's kind of an irritating symptom the people that have the most problem with the utop symptom particularly when it involves the optic nerves is people who have had optic neuritis in both eyes so for example if they're on a treadmill and they get overheated and their vision gets very blurry in both eyes it can be a significant problem so there are a couple of ways that we try to avoid utop symptom the easiest is to cool stay cool so while you're exercising for example drink plenty of cold liquids have a big old bottle of water with ice in it that'll decrease your core body temperature and minimize the blur other people wear cooling vests i'm sure many of you are familiar with cooling vests to keep your core body temperature down in the midst of being overheated either exercising or if you live in a hot climate and that should minimize utop symptom as well there are some medications that seem to help minimize utoph's uh symptom or utah phenomenon one of them is four amino pyridine and that's the medicine or it's the same as the medicine that's in pyrrha which is what's used to treat uh gait dysfunction in ms but if you hav if you take empire for your walking you may get the added benefit of minimizing utop's phenomenon one of the things we see in the optic nerve when we look in the back of the eye is that the optic nerve becomes pale i should have put a comparison picture here from the previous slide try to get this in your mind's eye how this optic nerve looks you see how bright this is in this part of the optic nerve within that circle in the back of the eye we're going to go back really quickly to the normal optic nerve you can see how kind of reddish brown this one is this is a healthy optic nerve a paleoptic nerve or atrophic optic nerve occurs after people develop optic neuritis even if their vision recovers the optic nerve is still slightly damaged and you see that when you look in the back of the eye that the optic nerve looks pale so this is a really common finding after optic neuritis whether or not a person's vision improves we see this the other situation that we see this in multiple sclerosis is oops there we go the other situation that we see this in multiple sclerosis is in people with progressive forms of ms even when people with progressive forms of ms have never had optic neuritis they sometimes develop optic atrophy for reasons which is unclear we know that when people have progressive forms of ms one of the possible causes of the worsening is that there is gradual increased dropout of nerve cells in the central nervous system and that's probably what happening in the optic nerve as it does elsewhere in the nervous system but even people with progressive forms of ms who develop optic atrophy almost never go blind there are some cases of people with ms who lose a significant amount of vision either from recurrent optic neuritis or from progressive ms but it's not very common at all i've seen over the past few years only a handful of people with ms who lose a lot of vision some people have vision problems i mean i don't mean to deny that but for ms to be actually blinding is very unusual so what about eye movements well we've been talking about what happens in ms when it affects the optic nerves behind the eyes we're going to shift our focus to the base of the brain the brain stem and the cerebellum which are kind of at the base of your skull and in the back of your head and those are the parts of the brain that do all sorts of stuff but one of the things that they do is control the way our eyes move uh including the way our eyes work together so when people with an ms relapse that occurs in the brain stem or in the cerebellum uh one of the relapse symptoms can be related to vision and there are a couple of really common findings that we see with eye movement disorders in ms the most common is a highly technical term it's called internuclear ophthalmoplegia it's easier to say ino and that's what doctors will refer to in internuclear ophthalmoplegia as i betcha there are at least a couple people on this call who've had an ino whether or not their doctor actually used that technical terminology because it is the most common eye movement disorder that we see in ms just like the optic nerve just seems to be really susceptible to whatever it is that creates inflammation in ms the pathways in the brain stem that cause inos are also uniquely susceptible to the inflammation of ms we'll talk a little bit about inos in a second the other type of eye movement disorder that people with ms get frequently is called nystagmus and that's where the eyes bounce repetitively in one direction or another um when people get nystagmus they typically get unsteady they see things moving that aren't moving they can us the world can kind of oscillate um or nystagmus can actually cause vertigo as well and finally when ms affects the pathways that line the eyes up together that can create a misalignment of the eyes and the symptom is double vision so this slide is kind of a picture i don't know if you can appreciate this if as if you're looking down onto a person's head from above and you can see the left eye over here on the left here's the right eye over here on the right this is showing the eye muscles that move the eyes or at least a couple of the eye muscles and this shows more or less how they're connected to pathways in the brain stem which is shown here in cartoon form um areas in the brain stem that contain a whole bunch of the same type of nerve cells are called nuclei so you see a whole bunch of different nuclei in the brain stem here there's the vestibular nucleus that connects the inner ears to the brain then there's the abducens nucleus and the ocular motor nucleus those are nuclei in the brain stem that directly send nerve cells out to the eye muscles and there are all sorts of pathways within the brain stem that connect all of those different nuclei that allow us to control our eye movements and use our eyes together so if any of these pathways get affected by ms then the eyes may go out of line they may cross in they may cross out and a person may get nystagmus where the eyes spontaneously move there's this one particular nerve cell pathway in the brain stem it's called the mlf or the medial longitudinal fasciculus it's this particular pathway that ms really likes to go after and when people with ms get inflammation in their mlf they get that very specific type of eye movement disorder called the ino or intranuclear ophthalmoplegia and i'll just show you with my hands what an ino looks like if you can imagine each of my hands is one of my eyes my right hand's my right eye my left hand's my left eye if a person has an ino on the right side what happens is when they look to the left the left eye moves over but the right eye doesn't the right eye is kind of stuck and then when they look in the other direction to the right the eyes are in line but they bounce they have nystagmus and frequently when they look up the eyes bounce when they look up so a neurologist or a neuro ophthalmologist who sees a young patient who comes in out of the blue with dizziness and double vision and sees that they have an ino will immediately think boy this could be the first symptom of ms just like we think when we see a young otherwise healthy person come in with what sounds like optic neuritis so that's an ino or intranuclear thermoplegia inflammation elsewhere in the brain stem really commonly causes nystagmus where the eyes bounce repetitively in one direction or the other it could be to the right or the left could be upbeat or it could be down beating nystagmus some people with ms gets what's called pendulum nystagmus where the eyes just kind of oscillate side to side that is more typically when people get pendulum nystagmus that's typically occurs with progressive forms of ms whereas inos and nystagmus more often occur with relapses but they can persist in people who have severe relapses or who have some people with progressive forms of ms so then the question is well what do you do about it and frequently we don't have to do anything if a person's having a relapse where they have an ino or double vision or nystagmus we can treat them with steroids to try to get them better quicker if the relapse goes away completely well then good you don't have to do anything about the eye issues specifically however if the ino persists and the eyes aren't lined up and they're pointed out compared to each other or if double vision persists with the eyes out of line up and down or side to side then we often give people prisms in their glasses that way if you put prism in the glass it realigns the image coming into the glasses so even if the eye is pointed out you can put the prism on the lens to keep the light rays in the eyes coming in from an angle and that gives a person single vision you need to see a neuro-ophthalmologist or an ophthalmologist or optometrist to get prism when you have double vision so that measurements can be made to figure out exactly what strength prism might be helpful for you when people with ms have double vision that doesn't go away and is really stable over an extended period of time we sometimes even do eye muscle surgery to straighten out the eyes that's pretty rare to be necessary in people with ms but i've had a couple patients over the years who actually graduated from prison to uh eye muscle surgery but again not very commonly when people have nystagmus again as part of a relapse you just wait for the relapse to end but if nystagmus doesn't go away for some reason and people are left with eyes that are constantly bouncing or shifting and the world that they see is constantly moving as well we can use medication to suppress the eye movement and lessen the dizziness and the ocelopsy or sense of oscillation or vertigo the couple medications that we use most commonly are baclofen clonazepam and four aminopyridine that's also empyra the one that's not on the list that we use very frequently too is called gabapentin and we use gabapentin a lot for a lot of different reasons including nystagmus a lot of people are on baclofen for spasticity we can also use that for nystagmus same formula same thing with clonazepam it has multiple uses in people with ms so just a quick comment on the interaction between vision and fatigue we've already talked about utop symptom that when people with optic neuritis sometimes get overheated that makes their vision more blurry the same thing can happen with double vision and oscillopsia or this sense of oscillation that people with nystagmus can get all of these symptoms worsen with heat if you have utop symptom but they also worsen with fatigue a person with ms who's had optic neuritis or who has had a relapse in their brain stem is over compensating for the damage that was done during the relapse and it takes a lot of brain energy to compensate for those problems and as a result in order to compensate for the vision problem that takes away from your energy in general and can lead to increased fatigue so we know that visual problems can make fatigue worse but we also know that when people are fatigued it's harder for them to compensate for the vision problem and it makes it harder to see so to speak so treating ms fatigue is important that's a whole talk in itself you could probably talk for a day about ms fatigue there are a lot of ways to treat ms fatigue but when i see a patient who clearly is having problems with fatigue and vision and they're interacting i really make sure that they meet with their ms stock and talk about comprehensive management of fatigue simplest things get a good night's sleep next to that rest during the day beyond that we sometimes use caffeine and other medications to improve people's energy and that should help with vision in those cases we also need to keep in mind that a lot of the medications that we use to treat ms can make people tired or make their vision blurry um we mentioned gabapentin and baclofen we sometimes use those medications to treat nystagmus but those medications also are a little sedating and they can make it harder for people to use their eyes and have clear vision so you really got to think about people comprehensively when they come in with ms and visual symptoms and in determining all the things that might be contributing to the visual problems i want to tell you a little bit more about the msi clinic and what we do in the msi clinic and particularly about this new technique that we've been using for the past maybe 10 15 years called oct so when we see people in our msi clinic we do pretty extensive vision testing we want to know what your visual acuity is that's your vision using the regular eye chart we're going to check your low contrast acuity because that is specifically affected in people who've had optic neuritis even if they're high contrast visual acuity is normal we check color and we check visual fields you've got a complete eye exam we want to take a look at your optic nerves and see if there's any evidence that you've had optic nerve problems from ms but we also want to look at the rest of your eye and see if there's any other kind of ophthalmic condition that's not related to ms that might be affecting your vision and that's important because having ms doesn't protect you from every everything else you know if you have ms you can still get cataracts in fact you probably will people with ms can like everybody does everybody gets cataracts people with ms can develop glaucoma you can develop retinal problems not because you have any increased tendency for it but because those things just happen in the population so we want to look at the optic nerve but we want to look at the rest of your eye as well we're going to look really closely at your eye movements to see if ms has ever affected the eye movements but i want to spend a minute or so talking specifically about oct and what that is and how we use that oct is short for ocular coherence tomography it's a technique where we use a laser to measure the thickness of the optic nerve in the back of the eye if you look at this picture of the eye this is an eye pointed down this is the front of the eye and this is the back of the eye with the optic nerve coming out of the back of the eye you can see that the optic nerve heads back to the brain it sends signals from the retina back to the brain and in the back of the eye there's this thin layer of optic nerve on the surface of the retina and it all comes together right where the optic nerve trunk forms if you look really closely at this area magnified on a pathological specimen you can see that the optic nerve fibers are here and then they head through the back of the eye down through the trunk of the optic nerve what oct does is measure the thickness of this layer of the optic nerve in the back of the retina and you can see that all of the fibers in the optic nerve itself come from the retina so if you measure the thickness of the optic nerve in the retina you actually get a sense of the health of the whole optic nerve so if there's been damage in the optic nerve that's caused thinning of the optic nerve you're going to be able to measure that onto the retina and that's exactly what oct does you can see here this is kind of a the printout of what we get when we have an oct on a patient if you think about this circle here as being a map of the optic nerve the picture of which you see here it shows us what the thickness of the optic nerve is all the way around the back of the eye this eye looks nice and green all the way around that's good green is good this eye shows a little bit of red over on the side of the optic nerve where it's thin this is a person with ms who has had optic neuritis in their left eye their right eye is fine but the left eye shows thinning as a result of prior optic neuritis now what i didn't tell you about this person is they're coming in complaining of blurred vision in the right eye and pain on eye movement in the right eye so we know that this patient had optic neuritis in the past in the left eye and is now having optic neuritis in the right eye acutely it looks normal they have retrobulbar optic neuritis since the inflammation is behind the eye if you check six months later though you can see that in the right eye there's thinning now along the side whereas the left eye has stayed about the same as before so this shows that we can measure the thinning of the optic nerve over the course of about six months after a person has had optic neuritis it's a real powerful way of checking on the health of the optic nerve in some people with ms who have blurred vision and we're not sure if it's optic neuritis or not we may do an oct acutely and check again six months later and see if there's been any thinning and that'll help us determine even in retrospect whether or not optic neuritis may have occurred it's a useful research tool to see if interventions that we're using to treat ms or optic neuritis can prevent some of this damage this is the case of a person with progressive ms who has no visual symptoms at all and perfectly normal vision if you do an oct at one time point and you check a year or two later there's increased thinning compared to before you see there's more red here and a little more red here than in the prior oct that shows that the optic nerve has a tendency to thin in people with progressive forms of ms even without visual problems or symptoms oct has been particularly helpful in looking at what's going on in the rest of the retina in people with ms we really concentrate on the optic nerve because the optic nerve is so commonly affected in ms but if you look at all the different layers of the retina in the back of the eye i don't know if you guys remember the rods and cones which are kind of in the back of the retina and then there's several layers of nerve cells through the retina before you even get to the optic nerve cells which are right at the surface but we find that in ms there's inflammation occurring even in deeper layers of the retina than just the optic nerve layer so you don't normally think about it but the retina is really part of the central nervous system and so it's not surprising that if you look really close at a microscopic level at the retina you can see that there's inflammation and changes occurring in people with ms so how do we use oct well like i talked about a minute ago we helped it helps us confirm optic neuritis and people who we are not sure if they had it or not to see if there's been thinning it helps us track ms progression i didn't really talk about the use of oct and looking at the retina or the macula people who are on jolenia know that they need to have their eyes examined to check on their retina health because gelenia can affect the retina oct is a real easy way of detecting that and we use it a lot these days in research to understand the changes that occur in nerve cells in ms relapses in ms progression and whether or not treatments that we want to use are effective and helpful in preventing some of that optic nerve damage so that's a lot of information i hope that it was helpful and that it generated a whole bunch of questions so now what i would like to do is have casey open up the questions and i'm happy to answer whatever questions you guys have it looks like we've got at least 15 minutes or more to talk thank you so much dr may and we do already have questions flying in through the group chat good said i'd like to remind our listeners if you would like to ask a question you have a couple of different ways to do that you can use the chat feature and type in your question or you can use the raise hand feature and i'll bring you on the line to ask your question live to do that you click on the screen to pull up your menu you'll see the more button with the dot dot dot and you'll click raise hand once i bring you on the line you will have a button come up on your screen that says allow host to unmute and please click that to allow me to unmute you but let's start with some of these questions from chat melanie says regarding steroids for the treatment of optic neuritis have they come up with an alternative for patients who are allergic to steroids well it depends you know there are some people who do not tolerate certain types of steroids so for example the the type of steroid that we use most commonly is solumedrol or methylprednisolone and some people are intolerant of solumetrol but they tolerate other forms of steroids and those are people that we can put on high-dose prednisone there's another type of steroid that's called dexamethasone that can be used sometimes so if it's tolerability or allergy to a certain type of steroid there are alternative steroid choices in people who absolutely do not tolerate any type of steroid at all then if they need the ms relapse treated another option would be more aggressive procedures called plasma exchange and plasma exchange is where um you have a kind of a central iv line where the blood is withdrawn and filtered and then given back to you and that is thought to help some people with severe ms relapses it's a pretty big deal to get plasma exchange though so you really want to be sure you're treating a major relapse if you get plasma exchange similarly there have been studies looking at what's called ivig or intravenous immunoglobulin which is an intravenous treatment of a blood product of immunoglobulin an immune protein that may be effective at treating again severe relapses but then there's always the option of not treating a relapse at all because the likelihood is that uh a person's gonna get to the same level as um they were gonna get whether or not they get steroids or not now that doesn't apply for related syndromes there's a ms-related syndrome it's called neuromyelitis neuromyelitis optica or nmo um we pretty much try our best to treat every single person with a relapse of nmo because those tend to be quite severe and there's good data that the earlier you treat those the better the outcome is that's probably not the case with ms and another question with regard to steroids antoinette asks regarding high dose high dose steroids in treating optic neuritis you stated that steroids do not change one's vision but hasten their recovery however the last eye appointment i had the ophthalmologist said i have a light cataract in my eyes and in our discussion it was presumed that the use of high-dose steroids for the past three years have contributed to the appearance of cataracts do steroids cause or impact the appearance of cataracts and can cataracts be confused with the blurry vision of optic neuritis well a couple things it is true that steroids probably do not affect the outcome of optic neuritis itself so within that couple of month period of time that a person is recovering from optic neuritis the visual outcome is going to likely be the same whether or not a person has been treated with steroids or not it is true that cumulative treatment with steroids does tend to bring on cataracts earlier than people would otherwise get them so absolutely positively um steroids can uh generate cataracts and people who otherwise wouldn't get them quite so soon um so i think the ophthalmologist is probably right along those lines now cataract blurred vision is usually not confused with optic neuritis blurred vision because cataracts come on super slowly and optic neuritis is a relatively acute condition that comes on over the course of days or so and then goes away after or gets better over the course of several weeks and cataracts just get slowly worse with time like over years um on the other hand some people with more chronic forms of ms who have had optic neuritis or even who haven't had optic neuritis can develop blurred vision as they get older and they can have cataracts like pretty much every older person gets and if they have ms and cataracts there's sometimes question in the eye doctor's mind how much of this is due to the cataract and how much of this is due to the ms if there's a question about that that's frequently where we see people ophthalmologists in order to help sort out whether or not it's really worthwhile taking the cataract out because if you're having a visual problem related to the optic nerve not functioning properly from ms you hate to bother with cataract surgery if it's not helping but generally we're able to predict pretty well whether a person with ms and optic nerve problems really needs cataract surgery or not we had a question about a utah's phenomenon the question was is it better for a person who experiences blurred vision or vision symptoms when they are exposed to heat to have their eye testing done in the cooler months you know uh probably not you know i don't think it matters because utop symptom is pretty i mean if you live in the south where it's really hot and you go and get your eye examined in the middle of august um the odds are at least in this country that you're going to go to the eye doc and it's going to be air conditioned so rather than avoiding the exam completely if that's a appropriate time for you to get it done you might want to just make sure that you go in and you have time to cool off get in the air conditioning drink some cold water and then get your eye examined so that you can get give the best performance possible so to speak but utop symptoms should wear off you know within 20 30 minutes or so so i think probably not too critical now there may be some people floating around who are super sensitive to heat and if they get overheated their vision stays blurred for hours in which case you're going to have to be a little more careful about when you get your eyes examined because if you're going to go to the expense of seeing an ophthalmologist or optometrist getting a whole new pair of glasses which cost a fortune these days you really want to give the best performance possible in the office so that the doc can give you the best possible spectacle prescription kathleen asks are there any other treatments in clinical development to help nystagmus the only med that vaguely works for me is clonazepam and i've had nystagmus for almost a year now prism glasses help but i cannot drive due to dizziness well there are a couple of different medicines to choose from nystagmus is a tough field to study but there have been some reasonably good studies over the course of the years that uh have given us some insight how to treat nystagmus i don't know of anything new so to speak uh in the works but uh there's several medicines that we use which medicine we use for nystagmus depends on exactly what type of nystagmus uh a patient may have so for example there's a type this type of nystagmus that we talked about pendulum nystagmus in ms where the eyes just kind of oscillate rhythmically side to side there's a medicine that's called memantine that works really well for pendulum nystagmus but doesn't work very well for other types of nystagmus there's a type of nystagmus that we see sometimes in ms it's called downbeat nystagmus where the eyes just beat down like that and the medicine that works best for that is for aminopyridine or ampera clonazepam tends to work pretty well for downbeat nystagmus too so what we treat you with depends on the type of nystagmus you have i would argue that anyone with nystagmus who has it bad enough that you need treatment should really see a neuro ophthalmologist and your ophthalmologist is not going to be able to help you with that and most general neurologists or ms neurologists are not that well-versed in treatment of nystagmus so if you've tried clonazepam and it's not getting you where you want to be particularly if it's keeping you from driving then i would make sure you see a neuro-ophthalmologist about that because i i think a neuro-ophthalmologist is going to give you the best opinion about what to treat you with and if you're already seeing a neuro-ophthalmologist it could be that really clonazepam's your best bet and may be hard to do anything else the you mentioned prism we sometimes use prism to treat nystagmus not very often but that tends to shift the position of the eyes when you're looking through the glasses and that can settle down nystagmus as well work sometimes it's they're kind of hard to use but it works sometimes another question related to prisms laura lynn says i cannot use my prism glasses for anything but sitting to read and when i take them off it takes a considerable amount of time to readjust to viewing without extensive pain i've found that prison glasses to help my eyes focus together has been difficult my left eye is weaker than my right my left eye has been completely blind in the past and my right eye has faded i've been without relapse for almost 10 years but i have not found a way to functionally manage the pain in my eyes any advice for laura lynn well that's a tough question you know it the question would be why it hurts i mean some people uh when they're having trouble using their eyes together and they have to strain a lot to use their eyes together that causes pain or discomfort in which case you really want to make sure you have the best optical solution to help you focus and use your eyes together with prism if you just have prism in your near glasses sometimes it helps to have prism in distance glasses at well as well so you can adjust from one to the other that sometimes requires having a couple of pairs of glasses that you shift back and forth to sometimes it's easier for people who are having difficulty using their eyes together to really get a good prism prescription in which case we sometimes just tell them to wear an eye patch or to cover one eye with a piece of tape on the lens or use what's called a clip-on occluder where you actually just clip on a piece of plastic over the lens that eliminates the second image and can take away the eye strain um so a couple options there either optical or occluding one eye sometimes though people who are headachy or have a history of migraines are just very susceptible to visual stimuli and get headaches triggered by eye strain and if that's the case if you treat the underlying headache disorder it can frequently make it easier for you to use your eyes and see so it sounds like this is another case of a person who really could benefit from a neuro-ophthalmology to try to put it all together give you the best optical solution that you can have consider occluding one eye and maybe treating the pain itself and seeing if that improves things sounds like a kind of a tough complex of a couple different things going on that hopefully an ophthalmologist can help with um loretta asks what about when trying to read a page and the lines seem to bounce my wife doesn't have optic neuritis or nystagmus as far as we know it only happens when she reads a book and not so much when she's looking at text on her cell phone good question i mean if if what a person is looking at moves as they're looking at it that usually means one of two things and one possibility is that there is nystagmus and the other possibility is that there may be double vision under those circumstances and that the person is shifting from one eye to the other as they're reading and that makes it look like the print is moving so i would say she needs a really good eye exam with a very good ophthalmologist or a neurophthalmologist to really determine what's happening when she's reading what i do in situations like that is put the person in the situation that causes the symptoms and look really closely at the eyes and see what's going on is there nystagmus is there misalignment and then coming up with a treatment plan based on that now we have a couple of questions very quickly because we're coming up on our end time about neuro ophthalmologists versus ophthalmologists lisa asks can a person convince an ophthalmologist to administer a contrast acuity if they're not a neuro-ophthalmologist and how you know most uh ophthalmologists are not going to be familiar well they're going to be they're going to know about contrast acuity but they don't do the testing in their office they probably don't even have the capacity to do the testing in their office some of the newer computerized vision test machines where they project the image at the end of the room for a person to see include contrast sensitivity tests but most ophthalmologists have never used them and their technicians have never used them either so it's going to be hard to get a contrast acuity test in a in an office that doesn't usually get them and that'll be the case with most eye doctors i don't know how critical it is i mean it's good information and ms neurologists want to know it and their ophthalmologists want to know it patients may want to know is this really what's going on with my vision um but you may need to see a neuro-ophthalmologist to get a low contrast acuity but it doesn't hurt to ask your ophthalmologist may say oh yeah we have that we can do that then you get a check it's worth asking and teresa asks does a neuro ophthalmologist in texas or for the rest of our listeners anywhere else in the u.s have access to the same tests shown in your ms clinic available to them yes how common is the uh the oct testing um in ms i would say it's not that common you know most people with ms never get an oct and that's okay uh anybody with ms who comes to a neuro-ophthalmologist is going to get an oct some ms neurologists like to get octs on their patients it's like kind of like following an mri scan on the mri scan you know we follow white spots the ms plaques and see if they're changing if people get larger ones or new ones or bigger ones similarly following optic nerve health on an oct can give an ms neurologist really good insight into how the ms is doing in general but even though we've been doing them now in ms patients for over 10 years the data is not sufficient to justify its use commonly for all people with ms at some point it may be more generally useful but now it's a bit of a niche test for a subgroup of people with ms uh finally how would someone go about finding a neuro-ophthalmologist in their area well two people to ask one is your neurologist and the other is your eye doctor all neurologists are going to know where the nearest neuro-ophthalmologist is because invariably they've used a neurophthalmologist in consultation at some point same thing with eye doctors if you live in fairbanks alaska the eye docs and the neurologists are going to tell you yeah you got to go to seattle for their ophthalmology if you live in the seattle suburbs they're going to say yeah you have a choice of three people in seattle to go see so um if you're if you're interested you can look it up on your own look up the it's called the nanoswept.org n-a-n-o-s oh i'll put that in chat if i can that would be great uh oh i know where's my chat um oh i can't find it of course well if you spell it out i'll do it n-a-n-o-s w-e-b dot o-r-g nanoswept.org yep okay i've put that in the chat and thank you very much and that concludes our time i would like to give our sincere thanks to all of our attendees today for their questions their attention their participation and especially our thanks to dr eugene may for this important information and for spending so much time answering your questions thank you so much thank you for having me and for paying attention you
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Channel: Multiple Sclerosis Foundation
Views: 1,751
Rating: 4.9259257 out of 5
Keywords: Multiple Sclerosis, Doctor Presentation, MS Treatment, MS Symptoms, Symptom Management, Zoom Conference, MS Focus, MS Foundation, Multiple Sclerosis Foundation, Multiple Sclerosis Treatment, Eye Health, Ocular Health, Vision Health, Ocular Degeneration, Vision Impairment, Eye Impairment, Vision Symptoms, Neuro-Opthamalogy
Id: VnLj2U-BQS0
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Length: 64min 27sec (3867 seconds)
Published: Thu Aug 13 2020
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