Multiple Sclerosis Vlog: Why am I worse?

how is it possible that you can have no new spots on your mri you cannot have had an attack since i last saw you in clinic and yet you're getting worse how's that possible don't turn away because i'm going to answer that question starting right now howdy thanks for learning about ms with me aaron boster i'm the founder of the boster center for multiple sclerosis where we care for families impacted by ms from around the globe in today's video i want to address a common frustration of families impacted by ms and please make sure to watch the entire video the second half i'm going to share some pro tips that i don't want you to miss how is it possible that they haven't had an attack how is it possible that the recent mri shows no new spots and yet they're still failing the litmus test of life they're still having difficulties and they feel as if they're getting worse how's that possible let's jump in let's start the discussion by throwing out some definitions when i say the word worsening what i mean is that your neurological examination is not as good as it used to be so when i do all the tests and stuff i can see that you don't perform as well as you did the last time i examined you your exam has gotten worse okay now there's two ways that we can experience worsening in ms one way is that you get worse following an attack and so let's use an example of a left eye optic neuritis okay so you lose vision on your left eye god forbid and you can't see so now if i examine you your exam is clearly worse no question about it let's take in this scenario that you do not fully recover okay so your vision returns after the optic neuritis but not 2020 not all the way maybe at the end of the optic neuritis you only recover partially and so now you have 20 over 200 vision in this eye you have sustained worsening because of incomplete recovery from an attack in essence you now have accrued some neurological disability because you didn't fully recover from this eye okay that's one of two ways that you can get worse in ms the second way you can get worse in ms is independent from an attack you can have worsening on your neurological examination but there's been no attack we actually have coined a term called pura progression independent from relapse activity right and i just introduced this term progression progression of neurological disability can occur in this setting of i didn't have an attack i'm just having more difficulties and here's the kicker it doesn't only occur in someone who's had ms for 30 years and has clear secondary progressive ms or in someone who has primary progressive ms if you're attentive and you watch in relapsing remitting ms the most common form people can have pira they can have progression independent from relapse activity so go back to this scenario that i started the video with i see you in clinic and i take a history and there's been no attacks since i last saw you and we look at a new mri and there's no new spots and yet you're having more difficulty doing things how's that possible first of all it is possible and it frustrates me when a patient has been told by a doctor that that's not conceivable or possible because look you're you expert you know your body and you know you that you're having more difficulties that's real to explain this i want to use a couple analogies and i'm going to use an analogy of a shotgun now i don't own a firearm but just pretend with me that i own a shotgun right so here's my fake shotgun and i shoot a hole in that wall in front of me right so now there's a giant shotgun hole in the wall and just for fun i leave it i don't fill it i don't repair it and every time we walk by it we giggle and say remember when i blew a hole in that wall all right now take this building that i'm in and fast forward 20 years all the building materials are aging they're getting older they're starting to wear out which wall of these four walls in the room i'm in falls first right it's a rhetorical question the wall with the holes in it falls first right because it's been structurally damaged when you have new spots on your mri that's brain damage when you have an attack that causes a loss of function that's caused by brain damage and it doesn't fully recover and so you're left with some structural damage your brain is amazing and it tries to rewire itself okay so it sets up new connections so that you regain function but it's working around areas of damage and as you age as a human being as you have birthday after birthday and as your brain and the rest of your body ages those old areas can wear out so i kind of sometimes think of this as sort of the devil's price if you will because you pay at the time of the injury you pay at the time of the attack but then you pay 15 years later when that area wears out and so you can see worsening on exam you can see someone who's struggling with a litmus test of life not because of a new attack or a new lesion but because areas of old neurological injury of old structural brain damage are now wearing out so what do we do with this information well for starters knowledge is power and i think it's super important that families impacted by ms understand properly ms pathology and they understand that you can have incomplete recovery from an attack resulting in worsening on exam or and you can have pura progression independent from relapse activity and that's another way that you can develop an accrued neurological disability so having that understanding for starters i think is worth it's it's worth something in and of itself second it helps us understand why we have to act ahead of time why we have to take steps ahead of time to prevent an attack from occurring to prevent new spots on the brain mri i want you to live your best life despite having ms and i want you to take steps early on to prevent the damage from occurring in the first place so that as your brain ages as you age and as the structures of your brain wear out that we're not going to experience damage and pay the devil's price where old lesions wear out later and then you pay a second time now sometimes nature's too generous and in fact there's yet another way that a person impacted by ms can experience worsening now this part is super important because these things are treatable right we can treat them and what am i talking about i'm talking about under treated chronic symptoms the most important example is depression people impacted by ms are twice as likely to experience clinical depression compared to the general population and depression clouds everything gray and ugly and it gives us the the outlook that everything is worse and very very importantly this has been studied people with ms with under-treated depression actually do progress faster in neurological disability compared to those with treated depression or without depression treating depression is a super important thing for those reasons and if we identify that you are sad blue and depressed and we can take efforts to correct that and improve that whether that be by medications or talk therapy or by exercise or by myriad other maneuvers the result will be that you will have a better outlook you will fare better your day-to-day will be better and in reality we slow worsening i'll give you a second example spasticity very common with people impacted by a mess someone with spasticity may have significant pain all day long they may have cramps that drop them they may have spasms which are really uncomfortable and kind of sometimes embarrassing or frustrating they can have difficulty bending their lens and this chronic symptom over time can erode at the quality of your life if we treat it whether that be by stretching and strengthening with physical therapy or with pills or with botox or with a baclofen pump or whatever if we treat it we can make you move more easily your walking improves so that worsening actually gets better because now you walk more freely but it also improves the quality of your life for other reasons not having cramps and spasms not having a limb that's really frustrating to bend and so this is another example where by treating a chronic symptom we can improve things and we can improve a sense of worsening third example cog fog cognitive fatigue or cognitive impairment is very common in ms now this is not an alzheimer's dementia this is a difficulty with multitasking this is difficulty processing particularly as the day goes on and you start to get cognitively tired this is a problem with remembering lists and doing things under time pressure etc someone who is experiencing cognitive fatigue at home or at work can feel like everything is worse because that is such a pervasive symptom but if we treat it and i have plenty of videos on this channel about how we can treat cod fog we can improve that aspect of things and everything improves in a in a sense the worsening is improved this section that i just talked about in my opinion is super important because if you have chronic under treated or untreated symptoms and we address them something very important happens for you and i want that for you check the mic and make sure my name is aaron boster and it's my hope that through these lectures i can up your game i can help energize you and empower you and hopefully educate you to better understand how to combat this nasty disease i make these videos every monday morning and i hope that you find them to be helpful definitely leave me a comment or a suggestion for a future video down in the section below now you may notice all of these awesome names on the screen with places from all around the world what you're seeing right now is excerpts from my recent live stream where i had an aspie camera and it was so awesome to see this global growing online village in mass and so i just wanted to give a shout out to all the folks around the world that jumped online with me it was an awesome evening and i look forward to doing it again [Music] right boys you

Channel: Aaron Boster MD

Views: 5,603

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Keywords: why am i worse?, BosterMS.com, Multiple Sclerosis Vlog, multiple sclerosis worsening, MS info, Boster Center for MS, aaron boster md youtube, ms treatment, multiple sclerosis videos youtube, multiple sclerosis treatment, multiple sclerosis (disease or medical condition), Aaron Boster Multiple Sclerosis, boster center multiple sclerosis, multiple sclerosis symptoms, multiple sclerosis progression, MS progression, Ms worsening, progressive ms, Progressive ms what to expect

Id: hTHEwPFcslE

Length: 10min 33sec (633 seconds)

Published: Mon Sep 20 2021