Welcome to Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode, we are sharing the highlights from one of our ‘Ask Aaron’ webinars, where neurologist, Dr. Aaron Boster, answers questions about MS from the community. Dr. Boster covers a range of fascinating topics such as fasting, menopause and gut health.
Welcome to Living well with MS. This podcast comes to you from Overcoming MS. The world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life. Through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Don't forget to subscribe to living well with MS on your favorite podcast platform so you never miss an episode. And now, let's meet our guest. Today's episode features highlights from the Ask Aaron webinar presented by Dr. Aaron boster recorded live in front of our global audience as part of the finding hope with OMS 10th Anniversary Edition webinar series. To join us live for the next webinar, or to watch the original presentation, head to our website, overcoming ms.org.
Dr. Aaron Boster 00:57
My name is Aaron Boster. I'm a native of sunny Columbus, Ohio, and that's in the Midwestern United States. I'm a board certified neurologist and specialists in multiple sclerosis. I decided to go into MS when I was 12. Not because my uncle had MS. He had had MS from my earliest memory, to be honest. But I remember very vividly coming into the kitchen, my mother and my grandmother were holding hands there, they were crying. They were super frustrated because they they couldn't get a hold of their doctor. And they were scared and they felt alone and they didn't know what to do. And I told my mom that I would learn to do it better. I didn't know what I was telling her I didn't know that I was going to do 27 years of school or that I would go bald long before I finished my training. I just knew that nobody should make my family feel that alone and that scared. And so that kind of led me on a sort of a mission driven plan to help improve the lives of people impacted by MS. I'm the founder and president of the Boster Center for MS in Columbus, Ohio, where we care for families impacted by MS from around the globe. And I maintain a YouTube presence with the YouTube channel, which is my name Aaron Boster. MD, where I intend to educate and empower and energize people impacted by MS.
Overcoming MS 02:15
So we've had one question from a lady who says that her daughter was diagnosed at age 11. She has multiple brain and spinal lesions and is currently 12 years old. And on Ocrivus. What would your advice be to all those young kids out there and their parents who have been diagnosed? And how do we remove the fear factor for the future that Google searches can create?
Dr. Aaron Boster 02:41
Notice that the unit is not the the child the unit is the family. And I think when you're dealing with a pediatric onset multiple sclerosis, it is paramount that that the family is the unit because it's going to take a village to help a young person in particular, live their very best life and make it through adolescence and into young adulthood and be a successful human. They're going to need that village. And so I really liked the way they framed the question just for starters. Now, people impacted by MS who have an onset of symptoms, pre-puberty, we call that pediatric onset MS. And whereas people with pediatric onset MS tend to get worse slower over time. They start from a younger age. And so they risk becoming disabled at a young chronologic age, because they've had the disease for a longer period. Moreover, the fact that we hear that this young person, this 12 year old has a lot of lesions in the brain and a lot of lesions in the spinal cord. Those are independent risk factors for a more aggressive disease, particularly the spinal cord lesions. And so having them on a highly effective medicine to me is very, very appropriate. Ocrevus is a highly effective medicine. Now to answer her question directly. Let's talk about helping your child be five for five in their fight against MS. This is an effort for the entire family to ensure that this young person with MS is five for five. So number one, we want to make sure that they don't smoke things. And very few parents say things like "smoke up Johnny." But but the reality is that if a young person smokes, they speed up their disease process by 50%. And so they can actually make themselves much worse by smoking in a very significant fashion. And so we would want to be very upfront talking to young people about the risks of smoking and in particular if they have MS. So that's number one is not to smoke stuff. I wouldn't send my comments to smoking not just tobacco but also cannabis. But the second comment is to supplement low levels of vitamin D. And both in Great Britain and in the Midwestern United States. We don't have the sun all year long. There is ample time where there's cloud cover, and there's not a lot of sun. Of course, when there is sun, we're told to stay away from it because we could get burned. And so we don't have an opportunity to develop vitamin D from the sun and lower levels of vitamin D drive the disease faster. And so supplementing this young person's vitamin D level, with D3, or by going out in the sun for 15 minutes, you know, in a halter top, you would absorb about 5,000 international units, this is going to help raise your vitamin D level, and it's going to help slow down that young person's multiple sclerosis. Number three is to have exercise as part of their lifestyle. And so we need to as a family engage in exercise as part of lifestyle and so that we can demonstrate in best behaviors. And I would encourage the entire family to embrace exercise, when it's nice outside, you go for a walk and kayaking and canoeing and what have you. And we have excellent data that people impacted by MS that exercise as part of their lifestyle end up less disabled at the end of their life as compared to they didn't. And so we want to help instill those important, very, very important behaviors in a young person as early as possible. So the fourth thing is to take a medicine and make sure it's working. And if I can be more specific to take the most effective medicine that that young person is comfortable taking and make sure it's working. Now, as I mentioned, I think ocrevus is a fantastic drug. And we would want to make sure that there were no new spots on MRI. In a young person, I would get a spine and a brain MRI annually to monitor, I would want to make sure that their neurological examination, including cognitive assessments are not waning, because there's a high risk that there could be some slippage there. And so we'd want to watch that. And we want to help cultivate a relationship where that young person felt comfortable saying, "Hey, I'm having a problem," because we want to hear whether they're failing or passing the litmus test to life to determine whether that ocrevus is working. Now, in the spirit of being five for five, number five is to practice daily mindfulness, something that a teenager doesn't do very readily. Again, the the the unit is the family, not the human. And so the family needs to engage in mindful meals, where we turn off the damn TV and we turn off the iPad and the music and we actually do something which was very, very key in the '50s and '60s and '70s, we talk to one another, and we actually look at our food, we eat our food, we smell it, and we spend a moment in the present. And so really, I would want that person to help their their young child be five for five and their fight against MS.
Overcoming MS 07:37
Somebody who says I'm due to start, Kesimpta injection injections, saying, Does Dr. Boster have any experience prescribing this drug? And if so, what is his view of it? Would he be able to give me any advice on potential side effects?
Dr. Aaron Boster 07:55
Absolutely. So you said it spot on Kesimpta. Now the generic name is complicated and I did not make it up. It's ofatumumab. So I just say ofatumumab fast a few times it's rather challenging. Because sometimes the trade name is a self-injection taken once monthly. For MS, it's a disease modifying therapy that came out. It was actually launched during the pandemic Believe it or not, and it is a B cell depleted in the family of ocralizumab, ocrevus, rituximab, Rituxan, it depletes adult B cells and is an extremely effective way of managing MS. Now, I do have some experience with the medicine I was involved in the clinical trials that led to its FDA approval, ASCLEPIOS I and II. And in its post marketing setting, I have certainly prescribed it to a lot of patients. It's a very easy drug to tolerate. Now, if you would like to learn about the medicine, ofatumumab or Kesimpta, you can check out my YouTube channel, type in Aaron Boster Kesimpta. And you'll find a video where I discuss the ASCLEPIOS trials in sort of the data behind where I get off saying that it's so highly effective because I kind of go through with you the rigor of how we lead to that decision. It's a very good medicine. It's a highly effective medicine. I think that a lot of the specifics about side effect profile and tolerance are best discussed with your provider or with your MS team, your MS Nurse but I certainly tried to go through a lot of those things in that video. Just to make a broad general statement high efficacy medicine. I'm a big fan.
Overcoming MS 09:34
George Jelinek was talking about the new handbook. He mentioned fasting and cryotherapy, which may be approaches that help people living with MS. What's your opinion on this?
Dr. Aaron Boster 09:47
So let me let me focus my discussion on fasting. I think I'm a little bit more comfortable discussing fasting as it relates to MS. So cryotherapy I'll set aside because I don't profess to have expertise there. Is a fool who thinks that she will can control a chronic neuroimmunologic condition with a pill. And the reality is if you're going to beat MS, if you're going to overcome MS, if you're going to experience recovery, I really think that you have to have a multi pronged approach. And I really think this is where George was going. And diet is a key element, a key element in the success or the failure, I think of someone living their best life despite having MS. And the more time I spent in the MS space, and I guess I've crested a decade and a half of helping families impacted by MS, the more and more I care about what people eat. And recently, and when I say recently, I mean, within the last year, I've also become very, very interested in not just what they but when they eat, when they eat turns out to matter. And so it leads me back to the question about fasting. And it's my opinion that intermittent fasting in specific is a bio hack, not just for people impacted by MS. But for humans. And it's my opinion that intermittent fasting is very, very safe in the setting of MS. Now, just in a quick nutshell, in the the concepts here are not complex. When you eat some food, particularly a carbohydrate, you your insulin level goes up. And Insulin is the storage hormone. So when insulin is up, you're telling your body store calories, and it makes it impossible to burn calories. Because if you want to store stuff, you don't want to burn it. And when you eat something and your insulin's up anything else you eat, you can store as fat or you can burn as fuel. Well, if you are an MS doctor, during a global viral pandemic, sitting in front of a zoom screen, snacking all day long drinking coffee with cream, and staring and not moving, you're gonna raise your your insulin level, I raised my insulin level and I couldn't burn fat and I gained a lot of weight. So by fasting for 16 hours during the day, I allow my insulin level to fall and I allow myself to tap into my fat stores. And I have lost a tremendous amount of weight that way. And it's not so much eating certain foods about when I eat foods. And so I recently have explored this rather extensively. I've done a lot of research and I feel confident telling you that it's safe to consider something like intermittent fasting with MS. The caveat being of course, you have to talk to your health care provider to make sure that there isn't specifics for you that need to be considered. But speaking generally it is safe to to participate in something like that. And it's a really cool and useful tool in MS. It makes me frustrated when you tell someone who is using a wheelchair would just exercise more. Well, they would love to exercise more, it's very hard to do that when they can't get up and move around. So that's not fair. Intermittent Fasting is a way that you can allow yourself to tap into fat burning without having to raise your core body metabolism by running or something. And so I think that fasting is a biohack that absolutely should be considered in the setting of MS. And just for those that don't know, when we say in about the 16 hours of fasting, what's the sort of recommended times for that then? So so this is one there's a million versions of fasting and the one that I'm most familiar with, and the one that I think is the easiest for a western audience to adopt is something called 16:8, where you eat food for eight hours, and then you don't eat or any calories for 16. So if I do this, so for example, for me, I start eating at noon, and I eat always until 8pm and then I don't eat anything from 8pm until noon. And I don't do any diet sodas or what have you. And then I try not to snack so even during that eight hour window I'm just eating two meals and it's been super duper so that's called like 16:8
Overcoming MS 14:19
We're still on the sort of the food area if you like. Someone's put "I often see healthy diets full of fruit and vegetables described as immune boosting, is this detrimental to MS suffers as our immune system attacks the myelin sheath?"
Dr. Aaron Boster 14:39
So if a supplement or a mineral or a food, stimulated your immune response and got your B and your T cells riled up, that would be bad for someone with MS because someone with MS has an overly active immune system. So you wouldn't want to stimulate that already overly active immune system. Fortunately, when people say fruits and vegetables are healthy, and they boost your immune system, that's not what they mean. It's much more of a colloquial boost your immune system like give you healthy vitamins and minerals like vitamin C and stuff, but it's not going to make the B and the T cells more activated. So as it relates to fruits and vegetables, immunologically, I think there's no concerns. Now, fruits and vegetables are a really healthy food option. And if I can make a plug, I think it's a really good idea to eat colorful fruits and vegetables, you want to eat things that are green, and things with colors, and particularly vegetables are lacking from a lot of diets, particularly American diets are low in fiber and low in vegetables. And so adding those in is actually a super healthy option.
Overcoming MS 15:53
Somebody's read an article from MS-UK saying that new lesions can appear on the spine without symptoms. And research is starting to show that at lesions can appear in this area without worsening or new MS symptoms. And the findings suggest patients with clinically stable MS should be monitored with MRI scans of the spine to check for asymptomatic progression. The question is how often should a person have spine MRIs if they have a history of having MS activity in the spine areas?
Dr. Aaron Boster 16:31
So that's a great question. So I can share with you from clinical experience that is 100% true. And that the old idea that you can't have a lesion in your spine without a symptom predates high field imaging. So with better imaging, we see lots of stuff in it, you can pick up lesions without symptoms, it does happen. I've seen it in my practice. So I can share with you what I do in clinical practice before the age of 60. I think it's a best practice to get a brain MRI once a year in someone with MS. I like cervical spine MRI about every two maybe every three years. Why? Exactly because of what this person is talking about the fact that you can, in fact see lesions in the absence of new symptoms. But there's also other reasons. Human beings have really poorly designed spines. Like if you and I were to design a spine, we wouldn't make it this way. And being upright, we're putting pressure on our spine and our discs can squish, and they can push on our spinal cord. And so if somebody with MS has a numb arm, I want to know is it from an MS lesion or from a disk that's pushing on their neck or from a job? So getting a spine periodically so I know the baseline I think is the best practice. Absolutely. And so I would recommend doing that even without symptoms at least once every couple of years.
Overcoming MS 17:58
Okay, there's a question just linked to this. So does having lesions in the brain, cervical spine or and thoracic spine mean a stronger likelihood of disability?
Dr. Aaron Boster 18:12
Unfortunately, yes, it does. It does mean that and so if somebody has lesions in their spine, I want them to be much, much more concerned about progression. And I want them to escalate to the most effective drug they're eligible for as quickly as possible.
Overcoming MS 18:27
Changing tack a little bit here. So somebody has secondary progressive MS. And the last drug that they were taking was Rituxan, and the doctor suggested try and holistic healing and they would welcome your thoughts on that.
Dr. Aaron Boster 18:43
So I'm assuming that the drug was Rituxan, rituximab, which is a cousin of ocrevus, and a highly effective drug which works both in relapsing disease states and in progressive disease states. And so that would be an outstanding option for someone with so called secondary progressive MS. Holistic Healing sounds like a code for I don't want to treat you anymore. And that's my concern. When I hear that I'm not saying that's what they're saying. I'm just saying that's my concern. When I hear that, let me approach the question slightly from the side, when someone wants to consider alternative medicine, which I will define as something that I was not taught in medical school, it doesn't make it good or bad. It just means I wasn't taught about it. So. So an example might be acupuncture, I was not trained in acupuncture. Which doesn't mean it's not real. It just means I don't know much about it. So when I'm presented with something that is alternative, then I'm okay with it as long as three rules are met. So the first one is it can't be too expensive. And the individual family has to decide if the alternative therapy they're considering is too expensive. Right? So I don't know if holistic healing is expensive or not. The second thing is it can't be dangerous. And so there are natural therapies that are very dangerous. I'll give you an example. Someone asked about immune boosting fruits and vegetables. Echinacea is a naturally occurring supplement which does boost the immune system and it will hurt someone with MS. So that would violate Aaron second rule explanation is a no no, because it's a supplement that could boost the immune system. And third is it can't be instead of something that that I know works. So now we come back to the question. It seems nonsensical to me to stop rituximab in someone who is still alive and has MS, particularly secondary progressive MS. And I would instead of considering an 'or' statement, I would like to consider an 'and' statement. How about we continue rituximab, which has been proven to slow progression in MS and add holistic healing on top of it.
Overcoming MS 21:00
Okay, the symptoms of MS and the menopause seem to be similar. This lady asked "do I wait for the menopause to settle on HRT and then see a neurologist if needed?" So hormone replacement therapy?
Dr. Aaron Boster 21:17
So that's a very interesting question. I don't think that many classic menopause symptoms mimic MS symptoms. There are some overlap with things like fatigue and with with sensory changes in skin and stuff. If you're having neurological symptoms, I endorse seeing a neurologist and no, I would not wait until menopause is quote "settled." Because what if it's not MS? What if it's something that needs a timely approach? Or if it is MS, what if it's active, and we need to do something about it now? So I don't see a high value in waiting. I would explore that in the now where I thought she was going with the question is a very interesting literature which demonstrates something that is bothersome, something that is impacting most women with MS which is when they have fluctuations in hormones, their symptoms worsen. So on the onset of of puberty, with each monthly menstrual cycle, during menopause, during pregnancy, during the delivery of the placenta, during breastfeeding, these are all punctuations in a woman's life, which include a change in hormone level, and that can result in an uptick of MS neurological symptoms. And so it is very, very relevant as a gal goes through menopause that we can see an uptick over baseline symptoms.
Overcoming MS 22:46
This person said they caught COVID and had no symptoms. But their MS symptoms got worse, still having issues with their left side, which is their worst side, especially with walking and their legs have stopped working well after walking for a certain period. Is this common after a virus or it? Could it be a relapse? And is there a good way to recover from it?
Dr. Aaron Boster 23:11
First of all, it's very common what you're describing. I've seen it there I say 100 times in patients who have contracted COVID. So very, very common. And what do I mean what is very common? Someone has COVID. And they either have a rough time of it or they don't have a rough time of it. But they clear the the upper respiratory tract infection, and their neurological status has taken a hit. And it takes a really long time to recuperate. So I want to make some comments about that in general and then specific as it relates to COVID. So when you have a new attack an MS attack, your naughty auto immune cells in the bloodstream cross the blood brain barrier into the central compartment where they find the brain and spinal cord. They think they're looking at a bad guy and they beat it up. And they cause new damage via inflammation. And so we'll use as an example, inflammation in the optic nerve and then you can't see you have an optic neuritis and then the inflammation goes away and then you regain function you can see again, but when I do an MRI of your orbit or when I do an ocular coherence tomography and OCT tests, I can see damage and it's not normal. It's maybe 90% of what it used to be. Now when you have an infection, whether that be a urinary tract infection, influenza, the flu bug, whether it's COVID, your body, your immune system is activated, it raises its attention, it raises your core body temperature and gets all riled up and gets spun up to fight the infection. And you can see what's called a pseudo attack or a pseudo exacerbation. So pseudo is Greek for similar to but an eight. So a pseudo attack is when you again have reemergence of an old neurological symptom. So I use the example of an optic neuritis, not pathologically because of new inflammation. Because when you raise your core body temperature, you short circuited that area of damage because it was only 90% as good as it used to be. And that's normally fine unless you're under duress in short circuits, and that's called a pseudo exacerbation. So when the human is fighting a flu, their old MS symptoms can come back out and wave to them. And then when the infection goes away, they recover. But here's a key learning. It doesn't happen right away. The infection ends on Wednesday. They're not neurologically better on Wednesday, and they're not neurologically better on Friday, and they're not neurologically better, sometimes a week or two later. It's not an attack per se, but it's a it's a phenomenon where the functional reserve, the neurological reserve doesn't bounce back quickly. It takes longer than expected, extremely frustrating. Now, that was a general comment about pseudo exacerbation from infection. Now, let me focus our discussion specifically as it relates to COVID. COVID-19 is not the flu, and it doesn't behave like the flu. And in my anecdotal experience, which is not small, it really is nasty amongst people with MS in triggering MS symptoms, and it takes a very long time to recover. I have several patients that have so called Long COVID, where for months and months, their fatigue is through the roof, where they have walking problems where their balances kaput it's really nasty. And unfortunately, I have a handful of patients where the COVID triggered and attack. Now how do we define an attack? They had a new neurological system they had never had before until they had their infection or in so on and so forth. So you're not alone, what you're describing is is actually common, and in my experience, you will get better, it's just going to take a lot longer than you expect it.
Overcoming MS 27:06
What is your prescription for fatigue and reduced stamina?
Dr. Aaron Boster 27:14
That is a fantastic question, because the most common symptom in MS is fatigue. And there isn't one magic silver bullet to fix fatigue fatigue, most certainly it is a multi pronged approach. If you go to my YouTube channel, I have an entire playlist of videos talking about ways to game out living your best life and fighting fatigue. But just in the sake of discussion, let's pick five things we can do to improve the team because I have five fingers on this hand. So the first one is going to be to take a disease modifying therapy because there's really good research that that people with MS on DMT are less fatigued statistically so compared to not being on a DMT. So that's one thing. Second thing is to make sure that you're getting adequate quantity, and quality of sleep. Now, most people listening to this are not getting adequate quantity and quality of sleep. Adequate quantity means you are budgeting eight or nine hours in the sack budgeting so you're not going to bed at 1am and waking up at 530. And quality means you're not getting up four times to pee and waking up with spasms and cramps and you're actually getting restorative sleep you don't have sleep apnea, restless leg, etc. And all too often human beings have really really cruddy sleep and sleep hygiene, including human beings with MS. And so if you are waking up not feeling refreshed. If you're waking up with a headache, then you're not getting restorative sleep. So number two is the sleep piece. Number three is to exercise as part of your lifestyle and say wait a second, do you hear my question? I have fatigue? Yes, I heard your question but the reality is people with MS who exercise markedly improve their energy levels. And so I'm not asking you to go on a forced march when you're exhausted but I am asking you to slowly integrate exercise in your lifestyle. We said we will do five that was three. Number four will be to remove sugar from your diet. So if you don't believe me good, I dare you to do it. In fact, I double dog dare you to do it. If cut out sugar and if you want to take it a step further, processed foods. You would be shocked at the the response to your energy will skyrocket. And number five is to up your water game because many of us are dehydrated and drinking adequate water will increase your energy levels.
Overcoming MS 29:42
Okay, somebody said how to manage shaky hands.
Dr. Aaron Boster 29:49
So shaky hands are common in humans. We call that a tremor. And there's a bunch of different kinds of tremor. So when you go to neurology school you learn about a real tremor and an essential tremor and cerebellar tremor and blah, blah, blah, blah. And so I can't answer the question without seeing it and without having a better understanding of it, is it active when you're moving or only when you're at rest or etc. And so what I would do is I would take a video of the tremor because most people have a phone that has a camera on it. So when you see it, film it and describe it in the camera and show it to your neurologist say, this is bothering me, what is it? And is there a treatment for it? Because very often, a pill or even a weighted bracelet or something of this ilk can make it better.
Overcoming MS 30:41
All right, thank you. Um, somebody's asked what is your go to treatment for an acute exacerbation?
Dr. Aaron Boster 30:50
So my go to treatment is only after I've done a few things, right. So when someone is having new neurological symptoms lasting longer than a day, or old neurological symptoms that have been going on for a long time, and they've come back for longer than a day, I'm worried they might have an attack. So what needs to happen? Ideally, we examine them. And we check for a UTI, a urinary tract infection, because they could have a psuedo attack and not realize it and you want to treat a pseudo attack with with antibiotics, not steroids. But let's pretend for the sake of this discussion that we've done those things and we have clarified: Yes, this is an attack. My go to is oral high dose steroids. Now, I run, I own and run an infusion operation. I have infusion nurses, and I can run IV Solu-Medrone which is fine. But I would rather give oral steroids because they're equally effective. They're equally as safe equally as well tolerated. But in the United States, they cost about 40 bucks compared to a couple $1,000 for IV steroids. And so you can take oral steroids in your bathroom in the tub or a you know at the breakfast table or what have you. And yes, there are some precautions and rules to take in high dose steroids. But they're typically easily tolerated. So that's my go to for a first line for dealing with an MS attack is and when I say high dose oral steroids, I'm talking about 1250 milligrams. In the United States, we only make a 50 milligram tablet. And so that's 25 tablets each morning for five consecutive mornings. It's very, very high boost.
Overcoming MS 32:27
Okay. Somebody said that they've been looking into gut health gut biome. And it's connection to brain health. They'd love to hear your thoughts on this with respect to MS and its progression.
Dr. Aaron Boster 32:42
So super interesting topic, I do have a couple of YouTube videos on the microbiome and gut brain connection. To speak to it a little bit right now. This is a very disturbing thought. But it's a true statement, we have more bacteria cells in our bodies, then eukaryote human cells. That's a fact, we are more bacteria than human, which is really weird. And the majority of those bacteria live in our gut. So our gut is about 27 feet of tubing. And it's lined with billions with a B of colonies of bacteria. And those bacteria live in a symbiotic relationship with us, we put food in the tube, they digest the food and eat it and help us break it down and metabolize our foods. So we couldn't live without those bacteria. It's like a team kind of sport. Turns in so that those colonies of bacteria are referred to as the microbiome. That's the fancy pants Doctor term for all those colonies bacteria. And it turns out that in some conditions, that the microbiome plays a role in altering the immune response. For example, there are gut autoimmune conditions like ulcerative colitis, or Crohn's disease, and the changes in the microbiome can influence the severity of the Crohn's disease or the the ulcerative colitis. It's also very interesting that in MS the autoimmune condition that we're talking about today, there is a dysbiosis. So that's a doctor term for the microbiome is jacked up, you have the wrong kinds of, of colonies of cells, really weird. And that's called dysbiosis. And there is a emerging belief or theory that if we could figure out which are the good bacteria, we might be able to transplant the bad for the good bacteria. And we might be able to alter the immune response. And there are investigations ongoing right now looking into that there are studies looking at giving people pro or prebiotics, so they actually swallow good bacteria. There's even dare I describe fecal transplant trials, which is what it sounds like when you take someone else's fecal material in a pill that is safe or in a depository, and you introduce their their healthy bacteria and to repopulate your gut microbiome. Now, the jury is out. And this is still research, so it's not primetime. And I presently actually recommend probiotics to almost all my patients, but not for an immune reason. I do it for gut reason, when impacted by MS, with dysbiosis, have horrible constipation, or they have what we call IBS where they're having diarrhoeaone day and constipated the next. In probiotics, which changes this dysbiosis to a better microbiome helps with that a great deal. Great question.
Overcoming MS 35:47
Okay. There's somebody here says they have, when they take a hot shower, the tingling their leg intensifies, and then fades. The question is, does exposing themselves to heat in this way actually cause any damage to their nerves, as opposed to just a temporary discomfort? And does this accelerate any progression in the long term by overloading their nerves.
Dr. Aaron Boster 36:14
This is such an important question. So let me start by thanking the person that asked this question, because it is a very, very important question to know the answer to the answer is you can't hurt yourself heating your body up, you cause no damage. Alright, so when you get in a hot shower, or a hot tub, or if it's hot outside, or if you're jogging, and you raise your core body temperature, you can cause your neurological system to short circuit temporarily. And the leg that was numb during the attack that got better, can get numb again. But it's not causing damage. And as soon as your body cools back down, it goes away again. And I'll tell you a very brief story about a young lady that had a terrible addiction that I could not cure her of. She had an addiction to running. And I tried desperately to get her to not do it. But she was very insistent upon it. And she ran marathons until the MS made her right leg numb, actually very similar to this question. And she stopped running completely much to her chagrin. And the reason she stopped running was because she thought she would damage her spinal cord. Once I educated her that not that she wasn't going to hurt her spinal cord, she reengaged in running with a very, very small behavioral change. She could cocked her head down about 15 degrees, so that out of the corner of her eyes, she could see her numb leg. Because at mile three, it went numb and she couldn't feel it. She has run marathons that way. I'm very proud that I have pictures of her on my wall in my office. And the whole time she's running from mile three to 26. She can't feel her leg. As soon as she finishes the marathon in her body cools back down. She's good in the hood and you will be two very good question. Thank you for asking it. Thank you, Aaron. Somebody said, What's your view on vaccination and autoimmunity? So, the we have to first ask ourselves, what's the risk-benefit of the vaccine in the context of the risk-benefit of why we're taking the vaccine? Alright, so I'm going to assume that this is a question born out of the current COVID pandemic, right? Because that makes sense. And we have now surpassed 6 million human beings that have died in under two years, because of this pandemic. The majority of people that have died are at risk because they have chronic conditions or they're on immunosuppression, or they're the extremes of age. And it's, it's a abomination. I've lost many patients these past two years that should not have died. And a vaccine is a godsend, in the truest term God sent from God to help us with this pandemic. And I think that it's some of the most important medicine that has graced Earth. vaccines have done more to cure illnesses than any other therapy on earth. And the reality is that many of us don't remember the scourges of bubonic plague and smallpox and measles and mumps and stuff. The reason I'm saying all this is we have to remember why we're asking someone to take a vaccine, it's to protect them against something that could kill them, or that it could happen. Alright, so So that's the background. Now, if you have an autoimmune condition, and you take a vaccine when there are some specific considerations, and if you take a live vaccine, that's when you take a bug and hurt it, but don't kill it and injected into you. There's a theoretical risk that it could trigger an infection and then trigger an attack. And that is theoretical. And in fact, outside of yellow fever vaccine, you don't see that. And so in clinical medicine, it doesn't actually even pan out as a problem. That stated, we generally we being MS providers avoid, live vaccines. COVID vaccines are not live, they're dead. So the mRNA vaccines, which are mostly used here in the United States are dead vaccines, they're not alive, and they don't pose any risks to someone with MS taking them. The vast majority of my patients have tolerated their vaccines without any issue whatsoever. None. And when they have later contracted COVID, they've cleared it in, they look back and think, man, I got away in a really good spot because I was protected. There are a handful of patients, a minority of patients where the vaccine triggers a worsening of their MS symptoms. And we have to weigh the risk benefit of what happens if they have COVID. Now, I've had patients say, Well, I don't want to risk my MS symptoms getting ticked if I take a vaccine. But my immediate counterpoint is, if you get COVID is going to be much worse, and it's going to take your MS much more intensely. And so even that argument falls pale. And so I think that it is a special consideration, and it is something that you need to be talking to your MS provider about, but I would say nine and a half times out of 10 or 9.9 times out of 10 I'm in favor of that person being vaccinated and boosted.
Overcoming MS 41:37
There's a question here. Somebody's asked, Are there any labs that can monitor MS progression? Is it common for platelets to be low? If taking Copaxone.
Dr. Aaron Boster 41:52
So that's two separate questions. So the first question in the second question we'll just do separately and we'll do it backwards. So the second question, Copaxone glatiramer acetate does not lower platelet count. No. So if your platelet counts lowered, I wouldn't be worried about something else. I wouldn't consider it to be because of the Copaxone. Copaxone doesn't cross a cell membrane, it doesn't trigger a receptor, it doesn't do anything to your platelets. So it's that. So there is a biomarker, which is really what we're talking about. A biomarker is a way of measuring a disease that's not measuring the human, it's like a and so the best biomarker that we have for MS is an MRI, which takes a look at structure. But there is a biomarker that's being developed called neuro filament light, neuro filament, light chain, neural filament light chain is a product inside the axon. So I will use this, let me grab a wire, there's all these wires around me. So here's a example wire, let's pretend that this is the axon, okay. And in MS it breaks in. So when it cracks, all the stuff inside spills out into what's inside the axon, these change neurofilament, heavy chain, neurofilament, medium chain neurofilament light chain. And so all the chains get dumped out into the spinal fluid and make their way into the bloodstream. And it turns out that the neurofilament light chain correlates with disease activity. So the higher the neuro filament light chain in the bloodstream, or the higher the Neurofilament-light chain in the spinal fluid, the more likely that person has poor control their disease, the more likely they're going to have an attack, the more likely they're having progression, the more likely they're not going to respond their medicine. And you can imagine a scenario where we draw a Neurofilament-light chain blood test every every three months and a human to measure how they're doing. And if they're responding to their medicine. Now, it's not primetime yet, we still have a lot of work to do. For example, we don't know the baseline values, we do know that it gets that as you age, your neural filament goes up. And so we have to have a baseline that changes with age. We also know that other neurological conditions can trigger neurofilament light chain, so stroke or ALS. So there's still a lot of work to be done. But boy, is it really exciting to imagine that we could get a blood test and give us a sense of if we're winning or not.
Overcoming MS 44:13
Somebody picked up on something you said earlier about making recommendations for MRIs for those eight up to 60. And so they've asked What about the over 60s?
Dr. Aaron Boster 44:24
Now, this is just Aaron boster. His personal opinion, this is not a recommendation by some organization, I guess except my organization. And it's my opinion that getting an MRI of the brain every year up in the age around 60 is a really good idea. After the age of 60 I think it's a discussion. If the person has had very very quiet MRIs then we may start to do MRIs every other year. If they have active MRIs or if there's a another concern, which would make us want to monitor then we're going to continue to get MRIs every year but it's my experience that at the age of 60, in a lot of patients, we can have that discussion. And we might start to do it slightly less often. In the United States, people pay a lot of money for their MRIs through their insurance, or they pay out of pocket. And so it's not a small factor to get a scan. And so I just tried to factor in the value of the scan. And I would say the likelihood of catching something decreases with chronologic. Age, do I draw a line in the sand at 60? And that's just my own opinion. It does not make me right. It just makes me really opinionated.
Overcoming MS 45:34
Just linked to that, then Aaron, somebody's asked, Is it correct that DMTs are less effective for older people age 60 plus, that we're staying with that demographic.
Dr. Aaron Boster 45:46
So there is a belief that the impact of the disease modifying therapy is probably less in someone who is chronologically older than younger, which does not mean it doesn't work in that person. It just means that works less well. So if you were going to get a 50% boost, when you were in your 20s on a given medicine, and maybe in your 60s, it's only 15%. I don't care, I still want the 15%. And so I don't want somebody to use that argument to suggest that it's therefore not worthwhile treating someone who's over 60 because that's shenanigans. It's very a good idea to treat someone over 60 even if the impact of the medicine is less effective, it's still it's still a much better than nothing.
Overcoming MS 46:37
Another person's asked is it correct there's no medication to help with Primary Progressive MS. She says her husband was diagnosed at age 62, after a few years of investigation of system symptoms, and his walking has been affected more and more now at age 65.
Dr. Aaron Boster 46:56
So I'm delighted to share that that's wrong. And that in fact, there is medicine that has been shown to help with PPMS. So I'm tickled to be able to share that with you. And in fact, I was involved in the clinical trial, the ORATORIO trial where we studied Primary Progressive MS. And we randomly gave people with PPMS dummy drug or ocrevus, Ocrelizumab. And what we found was, if you take Ocralizumab, we could slow disability progression by almost a quarter, 24%. And we can slow brain volume loss by 20%. Now, there's excellent work on going looking at the value of giving Ocrelizumab to people in wheelchairs, and what we're finding is it maintains hand function, and it maintains cognition. And so I would be very keen on considering Ocrelizumab. If for whatever reason, Ocrelizumab wasn't available, I would then apply transitive property of algebra and I would consider off label using another B cell depleted. So I would consider rituximab or Kisempta, Ofatumumab or even Mavenclad. Now, that's a very off label comment, I'm simply sharing that's the discussion I would have in the real world, trying to use the disease modifying therapy with someone with PPMS. Lastly, there's a wave of technology that's coming in about to crash into the shore. And that's the development of BTK inhibitors, Bruton's tyrosine kinase. And these are small molecules that they block B cell signaling without murder, which is really cool. So they don't increase risk of infection. And they turn off activated microglia, which are cells, innate immune cells in the brain, they hold tremendous promise, in my opinion, for PPMS. And I'm very proud that at the Boster Center, we're doing a clinical trial, looking at one of these BTK inhibitors. And this trial, we're looking at giving people with PPMS, this this BTK inhibitor to see if we can slow down their disease. And so there's a lot going on to treat ppms.
Overcoming MS 48:58
Thank you. Just a shift. Now, somebody's asked, I'd love to hear if you have any advice on MS and mental health. So anxiety related to the worsening of symptoms running out of energy and the future living with the diagnosis.
Dr. Aaron Boster 49:17
So people impacted by MS are twice as likely to experience anxiety compared to the general population. And so I'll start by saying that you are absolutely not alone, you're actually in the majority of humans with MS. Anxiety is a major thing. Now if you add that to the fact that there's a global viral pandemic, then it would be almost weird not to be anxious to be transparent and so if you're experiencing a worsening of your anxiety or your depression, I think that it's probably natural, fortunately, it can be treated. There are a host of things that we can do to treat anxiety and in the spirit of fives I'll list five things we can do. One of them in is medicine. And I do not like using the benzodiazepines like mother's little helper, like Valium, and Xanax because they can become addictive and you can develop a tolerance. But more importantly, they make you foggy headed, which is a problem with MS and they make you tired, which is a problem with MS. There are other medicines that I prescribe routinely that are not addictive and generally don't have a tolerance medicines like Buspirone and hydroxyzine, which I give people and they can take as needed for when they have a panic moment. And I like them to carry the bottle with them in their purse or in their pocket so that it gives them an empowerment a sense of control that if they were to start to get anxious. That's number one that's a medicine to break a panic attack when it occurs. The second thing is there are outstanding medicines in the SSRI and SNRI class medicines like paroxetine, sertraline, these are Zoloft, Paxil, these are excellent medicines, which can help with anxiety. And so oftentimes, we can put someone on a very low dose of these medicines in the background, and it helps manage their anxiety in a very excellent fashion. A third thing is exercise has been shown to help people manage anxiety. And it helps reduce stress, which also can help with anxiety. And so that's an important one. Working with a counselor is brilliant and very, very important and can be done on Zoom that can be done on via telemedicine, because a counselor will help you find these patterns, which causes like a positive feedback loop where you get anxious, and it kind of feeds into itself. And then you can't break it. And they'll help you identify those. So you can break them. Very, very powerful tool, which oftentimes you can't figure out on your own, you can only figure it out working with a trained listener. And lastly is that mindfulness that I was talking about. So walking in nature, or spending time in nature for 15 minutes, sitting down in your shower, and breathing, your eyes close something that I do every morning, turning the radio off when you're driving, and really paying attention to the thing around you. These are all opportunities for mindfulness and being in the present moment, and they help reduce anxiety
Overcoming MS 52:20
Somebody asked, I've been relapse free. Following the OMS program for 10 years, will my MS be labeled as benign?
Dr. Aaron Boster 52:33
The working definition of benign MS is an EDSS, less than three at 15 years. But I personally don't believe in benign MS. And I would be very concerned about looking at cognition. And in functions like that and making sure that we're not having some things you wrote in the background.
Overcoming MS 52:51
Okay, and then best and safest safest treatment approaches for women during pregnancy and breastfeeding.
Dr. Aaron Boster 52:59
So what I assume you're talking about is how do you treat the MS while at the same time you're carrying your pregnancy? And there's several ways to do that. One of my favorite ways is to stay on Tysabri during attempts at conception and during the first and second trimester. And coming off halfway through the second trimester. That's very, very off label. It works great in my clinic. There's a lot of different ways to do it. That's one of my faves.
Overcoming MS 53:23
The point to finish on is we get a lot of people say they find it hard to talk to their health care professional to their neurologist, any top tips for opening up and making that conversation easier for people?
Dr. Aaron Boster 53:37
Yes, number one, do homework. So I prepare to see you. I go through your scans, I go through your notes, I prepare a list of questions, I prepare to see you. So you should do the same thing. Make a list of your medicines. Make a list of your questions, review your questions with your family and friends in your village and make sure you haven't forgotten anything. And make it known that you have a list when you go to see the doctor say "Hey, Doc, I have a list of questions" because culturally now she has to listen to your questions. So take a pen and paper and write down the answers as you talk and go through all your questions. "Hey, Doc, I really want to get through my questions today." Another tip is to bring a village member with you listener. So bring a spouse or a loved one or a friend because they are an extra set of ears and eyes. And if you're starting to get stuck, they can maybe chip in and help answer a question Show up early. You don't want to limit your visit because you showed up late and the doctor had to rush through the visit. So get there an hour early. That way any questionnaires that you have to complete or testing that you have to do you can do in a casual fashion and not be rushed. Because when you get rushed, it's harder to remember what you want to talk about. And it affords more time for you to spend with the clinician so that you can have a meaningful interaction. Lastly is you have to cultivate a sense of selfishness. It's your body and it's your brain. It's your insurance money, it's your life, so the doctor might be fine with your disability, are you? The doctor might be fine with not addressing that symptom, are you? And if you're not, you have to practice saying, Excuse me, Good sir, but no, I'm not okay with that, and I really need some help. And you have to practice that kind of conversation. But I think those are things that can hopefully help you feel energized and empowered to be able to have a meaningful interaction with your MS clinician.
Thank you for listening to this episode of living well with MS. Please check out this episode's show notes at overcoming ms.org/podcast you'll find useful links and bonus information there. Have questions or ideas to share? Email us at email@example.com or you can reach out to Geoff on Twitter @GeoffAllix. We'd love to hear from you. Thanks again for tuning in and see you next time for tips on living a full and happy life with MS.