It's NOT MS! What happens next?

Summary

Highlights

• Patients often end up in a confusing limbo with neurological symptoms but no MS diagnosis.😕
• Diagnosing MS is like piecing together a puzzle of symptoms, MRI findings, and more!🧩
• Many conditions, not just MS, can lead to symptoms and MRI abnormalities.🔬
• Symptoms can often be managed to improve quality of life, even without a definitive diagnosis.😊
• A comprehensive plan and sometimes specialist consultations are necessary to decide the path forward.👥

Key Takeaways

• Finding oneself in neurological 'limbo land' without an MS diagnosis can be super frustrating!🤯
• Diagnosis of MS involves a thorough process including history, exam, MRI, and sometimes spinal fluid analysis.🧠
• MS isn’t the only cause of white spots on MRIs—consider factors like migraines or blood pressure.📊
• Patients need clear diagnostic plans and ongoing symptom management for quality of life improvement.🙌
• Exploring neurological concerns often requires a whole team of specialists to figure things out!👩‍🔬

Overview

It's NOT MS! What happens next? Transcription

• 00:00 - 00:30 okay so you have neurological symptoms and the MRI of the brain report reads can't rule out demyelination you've been referred to the neurologist who says Nope not a mess what's going on that is a very uncomfortable limbo that some patients find themselves in where they're not sure where to go next my name is Aaron boster I'm an MS neurologist in Columbus Ohio and in this video I'm going to help you understand this limbo land of not being sure what's going on don't turn away because all of
• 00:30 - 01:00 that starts right [Music] now howdy thanks for learning about Ms with me Aaron boster as an MS neurologist I will see upwards of 6 to 10 new consults in a given Clinic week all of the human beings are sent to me with a question of maybe Ms the vast majority have genuine neurological symptoms that are quite bothersome
• 01:00 - 01:30 and the vast majority have MRIs that are abnormal and yet not all of them have MS so what gives it's a very uncomfortable place for a patient and a family to find themselves when they're struggling to help explain very scary symptoms they have abnormal test results and yet the neurologist is saying it's not a mess in this video I want to help decode that situation I want to talk to you about how we might find ourselves in that spot
• 01:30 - 02:00 what we do diagnostically as next steps and very importantly how can we address the underlying symptoms that are really ruining the quality of your life so with that in mind let's jump in so how exactly do you diagnose multiple sclerosis in the first place well there's five elements to an MS diagnosis the first is your story which we call the history of present illness which is really a fancy way of saying your story and what we're trying to do when we're hearing your story is we're listening
• 02:00 - 02:30 for elements that sound like Ms attacks or sound like progression of disability and this is sometimes confusing to people human beings can experience all kinds of crazy things including neurological things numbness double vision um Cog fog difficulty with bladder I mean the list is endless and if you ask yourself could symptom X appear in Ms the answer is almost always yes why because Ms is a
• 02:30 - 03:00 condition that affects the holiest of holies the supercomputer that runs the body the brain and the superhighway the spinal cord that takes all the information from the brain down to the feet and back up and if you have a numbness if you have a weakness if you have a double vision or what have you it could be explained by Ms but that doesn't mean that Ms is the answer and there are a host of other things that might be uh causing cusing those
• 03:00 - 03:30 symptoms many times a human is struggling with these neurological symptoms but the characterization of that symptom how quickly it comes on where on the body it is how long it lasts doesn't fit with what we understand to be Ms and again for someone who is not neurologically trained that can be super freaking confusing because if you use Dr Google and type the symptom into a search engine it may say yeah that could be
• 03:30 - 04:00 mess alternatively we're listening for a slow steady decline and function over a long period of time and again other conditions besides Ms may cause that if you want to get down to Brass tax the human being experiences things which we call symptoms they bring those symptoms to the attention of the neurologist and then it's on us to try to decode them and really if you're having neurological symptoms it's on me to try to do objective testing to clarify are are those symptoms in fact coming from Ms or
• 04:00 - 04:30 not now the second thing that we do of those five things is a neurological examination which I sometimes jokingly call the MS Olympics where the doctor's going to have you squeeze his fingers and touch your nose to his hand or something like this or follow his finger with your eyes all the things and what is all that testing for really the neurologist is doing diagnostic tests looking at the various systems that make up your nerv system the various sensory
• 04:30 - 05:00 systems the various motor symptoms the various symptoms that run your eyes for example and really on exam we're looking for evidence to buttress what you told us so for example if you experienced a decrease in Vision we may be wondering whether you had suffered an optic neuritis and we'll do tests where we shine lights in your eyes or shine a light in the back of your eye and we're looking for specific findings which would support an optic neuritis and so
• 05:00 - 05:30 that story and that exam need to hang together for us to feel more confident that this is coming from something like multiple sclerosis but it doesn't stop there because many different neurological conditions can cause symptoms and cause exam findings the third thing that we look at are the MRIs now the MRI machine is a really powerful tool it's a very very useful biomarker which takes a picture of the structure of your brain in spine
• 05:30 - 06:00 cord and if you have a white spot on your brain MRI the radiologist is going to read that and they're going to give what they call a differential diagnosis which is a list of all the things that it could be and the radiologist doesn't want to miss anything and they also don't want to risk being sued because they didn't State something and so there's a tendency in neuro Radiology to list any and everything it could be very often we'll see white spots on an MRI and we'll read the report and it'll say
• 06:00 - 06:30 something like um T2 hyperintense lesions in the Centrum semi oali um most suggestive of non-specific findings such as small vessel esemicolonr out demyelination and so a well-intended general neurologist or internal medicine doctor will read that and say gez
• 06:30 - 07:00 can't roll out demyelination and promptly send that patient to the MS neurologist I receive a lot of patients that have been worked up in this fashion which is understandable And yet when I look at the scan it absolutely does not meet criteria for Ms just because you have a white spot on the brain doesn't mean it's an MS spot and in fact if I took a magic marker and I wrote at the top of the wall there things that can cause white spots on your brain I would keep writing and keep
• 07:00 - 07:30 writing and keep writing all the way down to the bottom of the floor and I wouldn't be done listing things that can cause white spots these are things like migraine headaches I smoked a cigarette once I took an oral birth control pill I had a virus when I was a kid I got smacked in the head with a baseball I have high blood pressure I have diabetes it's a very very extensive list and the shape the size the location of the spots the way the spots change from one scan
• 07:30 - 08:00 to the next and the way the spots behave when we give the contrast die are all Clues to help us either feel more or less confident that those white spots are in fact coming from Ms now yes the radiologist is of course very sensitive to this but they're still going to cover their tush and say can't rule out demyelination and if I was to say the number one reason why I see a consult which has raised the question of MS and yet nuh-uh that's the reason why because
• 08:00 - 08:30 of the way things are called on the MRI now the fourth thing that we look at when working someone up for Ms is spinal fluid and often times patients come to me and they have not had spinal fluid drawn yet 90% of people with Ms will have changes on their spinal fluid which is kind of tricky because that means that 10% of people with Ms don't have those changes and yet they still have MS and if you don't have changes on the spinal fluid it doesn't disprove multiple
• 08:30 - 09:00 sclerosis speaking plainly if you have neurological symptoms but I can't find stuff on your exam and your MRI doesn't have classic spots concerning for Ms a lumbar puncture is not that helpful because even if it was positive it doesn't prove you have the condition and so very often in the absence of clear Imaging I'm not running to do a lumbar puncture now there's of course exceptions to every rule but I would say on average I'm getting a lumbar puncture
• 09:00 - 09:30 maybe 10% of the time now in various clinics it may be a lot higher it may be a lot less I'm just sharing my personal experience practicing at the boster center for Ms number five by the way is hey Aaron I'm Aaron prove it's nothing else and that's actually a lot of work typically we're looking at the MRI to look for other things that may cause white spots as I mentioned or other things on the MRI that may cause neurological symptoms I'll give you a great examp example I saw a patient
• 09:30 - 10:00 today that had a history of spinal cord problems and on exam had findings on exam consistent with spinal cord problems brain MRI had some white spots which were probably coming from some smoking cigarettes and some high blood pressure which has been uncontrolled however the MRI of the neck showed that a disc was pushing on the spine smushing the spinal cord and causing the vast majority of those symptoms so here's an example where I found a neurologic iCal problem but it wasn't multiple sclerosis
• 10:00 - 10:30 so in summary Ms is not a feeling it's not like an opinion you can confirm that someone has multiple sclerosis and if they don't meet those criteria it's very very very unlikely that they're going to have a mess and many people who have legit neurological symptoms find themselves in this limbo land so now let's talk about what do we do if we find ourselves in the situation where yes we have neurological symptoms and no doesn't meet criteria for Ms where do we
• 10:30 - 11:00 go next if you found this video helpful so far do me a kind favor and give the video a thumbs up also if you haven't yet subscribed to the Channel please consider doing so thank you so here we find ourselves in a situation where we have neurological symptoms but the neurological exam and the MRIs aren't adequate to confirm a diagnosis so what the hey hey what do we do next there are several diagnostic options to consider consider and I frequently will talk
• 11:00 - 11:30 through these options with the patient and their family on one extreme we say well here's my card and a hug and call me if something bad happens and otherwise take care and bluntly I almost never ever recommend that because it's possible that they could go on to have MS and I don't want to miss something one step slightly more conservative is to say call me if something bad happens and let's repeat scans at some interval whether that be in six months or whether that be in one year why because the MRIs these days are
• 11:30 - 12:00 exquisitly sensitive and you can't hide Ms spots on a properly protocol MRI and so if I repeat the MRI at an interval it helps me feel reassured either a I'm going to see a new spot concerning for Ms or B nuh-uh it looks stable and it's pointing away from the condition and there are situations where we may repeat an annual MRI of the brain for several years in a row in someone that we're genuinely concerned about we in some cases add spinal fluid as a
• 12:00 - 12:30 next step and bluntly I don't order spinal fluid very often but there are certain situations where the clinical story and the MRI is darn close to a diagnosis but it's not adequate and positive spinal fluid will literally confirm a diagnosis and so I would submit to you that if I'm working up 10 people for possible Ms I may be getting a lumbar puncture about one out of those 10 times for that reason there is another reason that I might order
• 12:30 - 13:00 puncture there are some people where the possibility of having Ms is so detrimental to their psyche and it's really shredding their quality of life that they want every test known to God and man and in those situations I may get a lumbar puncture because if it's negative it is profoundly reassuring but that's not a very frequent scenario now there are other tests which may help augment our understanding but they're not diagnostic for example I may get the MRI with a
• 13:00 - 13:30 brain volume assessment because in the setting of untreated Ms we'll see accelerated brain volume shrinkage and so if I see that your brain's a lot smaller than it should be that doesn't mean you have MS but it's a tip off that something ain't right similarly I may get ocular coherence tomography o which is a special laser shine in the back of the eye that measures the thickness of the retinol ner fiber layer the back of your eye and if it's thin in a certain pattern
• 13:30 - 14:00 that doesn't diagnose Ms but it raises my concern that that might be what's going on there are even these old school electrophysiologic tests like vs visual evoked potentials SS somata sensory evoked potentials and bears brain stem auditory evoked responses which measure essentially the conduction of electricity through the optic nerves the nerves of your arm spinal cord and your
• 14:00 - 14:30 auditory systems respectively and if they are slowed it doesn't mean you have MS but it's evidenced kind of leaning in that direction I will also on occasion order formal neurocom Metric testing which is sort of like the real de holy field for an IQ test because if we identify certain patterns of cognitive impairment that might increase our concern of something like Ms or if those things are normal and reassuring it may point away again not diagnostic but it
• 14:30 - 15:00 can be very helpful So based on the situation and the degree of concern that we have we're going to come up with some plan for what we do next it almost always involves if you have new symptoms lasting longer than a day than holler it often times involves repeating scans at some interval and depending on the scenario we may add a lumbar puncture or some of these other tests so it's important when we're not able to confirm a diag agnosis that we have a clear
• 15:00 - 15:30 diagnostic plan for how we're going to try to figure it out but in the meantime what do we do about the symptoms because this human being is suffering they've got real live neurological things that stink and yet we're not able to confirm a diagnosis so what do we do about that neurological symptoms can suck and sometimes my kung fu is strong enough to tell you what it isn't or at least what it isn't right now but it's not strong enough to tell you what it is and that's horribly frustrating particularly
• 15:30 - 16:00 because you still have the symptom well here's the deal there are many many symptoms that we can treat even though we don't know why it's occurring I'm not talking about treating it to remove it because I don't know the underlining cause I'm talking about treating the symptom to make it functionally better so you can have a quality of life let me give you a couple examples if you amongst other things are clinically depressed we can treat clinical depression we can hook you up with a psychologist
• 16:00 - 16:30 who's going to work on cognitive behavioral therapy we can start you on an appropriate anti-depressant we can get you involved in group therapy or an exercise regimen there's a host of things that can be done to improve that very very nasty symptom if you are having trouble with your walking whether that be because you're off balance or whether that be because you're weak or numb a physical therapist can do magical things they don't so much get into why is that a problem they get into how is
• 16:30 - 17:00 that a problem and how can we make it better if you're suffering from Cog fog and we get neuros pyometra testing and we identify that you do these things a lot better than most people your age and educational level but you are really bad at these things we can Target these things through cognitive rehab with a speech pathologist if you have neuropathic pain and it feels like your arm is burning and we might not know why your arm is burning we can still use neuropathic pain
• 17:00 - 17:30 medicines to dampen the pain and make it more palatable my point here is I think it's very important to only confirm an MS diagnosis when you have the appropriate objetive evidence to do so and it's very appropriate in this setting when you can't diagnose to have a clear diagnostic plan but thirdly and importantly it's also important to try to help that human being live their best life and by treating some of those underlying symptoms we can certainly try
• 17:30 - 18:00 to do that lastly sometimes we have Clues during the course of the workup and we may reach for another subsp specialist it's not uncommon for example that I may get a neuro opthalmologist to do a better eye exam or I may ask a rheumatologist or a physical medicine doctor to weigh in it takes a village to take care of a human being it takes a village to take care of someone with MS and it also can take a village to help someone navigate through through the limbo of an unclear diagnosis if you'd
• 18:00 - 18:30 like to learn more about Ms click the video that's on your screen right now and until my next video or my next live stream or even better yet the next time I see you at the boster center for Ms this is Aaron boster saying be safe and take care