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Living Well with Multiple Sclerosis
Webinar Highlights: Your opportunity to speak to a Neurologist about Living Well with MS with Dr Aaron Boster | S6E19
00:48:10
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- [00:00]
A
I want to do anything known to God and man to make Ms. Boring. And one of those things is to meditate. And one of those things is to eat, clean and supplement vitamin D. One of those things is to not smoke stuff. One of those things is to exercise. But one of those things is to take a medicine. And so I would not deny a family that opportunity as I try to bring everything to the table so that we can do the very best job possible.
- [00:29]
B
Welcome to Living well with Ms. This show 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. Help others discover Living well with Ms. If you enjoy the show, please rate and review us wherever you listen to podcasts. And now let's meet our guest. Today's episode features highlights from the Ask Erin your opportunity to speak to a neurologist webinar with 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 overcomingms.org I am.
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C
Really delighted to welcome our award winning neurologist, Dr. Aaron Boster to the virtual stage.
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A
Howdy. Thank you so much for having me back. It's a delight to be here.
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C
If an Ms. Patient has no symptoms and is older, no disability, no active lesions, by what age is the Ms. Considered benign?
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A
Ah, so the question is if somebody has no discernible disease activity, they're not having attacks, thank God, they're not having new spots. At what age would we call their disease benign? I think that the question is misplaced. I think it's well intended, but I think it's mixing up a couple terms. The concept of benign Ms. Is something that many Ms. Neurologists myself include don't believe in. It's like the Tooth Fairy. It's not actually real. My concern is that benign Ms. Is a misnomer that leads people into a false sense of complacency. The definition that I use for Benign Ms. Is 15 years since disease onset with a disability scale of less than 3, which is a very small disability scale. I really dislike that definition because it doesn't take into consideration cognition or energy levels or any of these kind of things. Now what the person is really trying to ask is not necessarily a benign ms, but at what point, can they sigh relief and say, hey, look, I've made it. I'm aging out of Ms. I'm old enough now that the disease gets quiet. So I think that's the intention of the, of the question. And if we take it as such, I would say that if you've made it into your seventh decade of life, then as the immune system starts to quiet down, we might be able to take a breath. Now, I want to be very clear that it's possible that you've done so well because you're on an Ms. Medicine, because you're adherent to an excellent diet, because you adhere to a lifestyle of exercise and you don't engage in smoking cigarettes. So it might be benign because of your hard work. It might be quote, unquote benign because of all the efforts that we've been putting in. And I certainly wouldn't want someone who is in that situation to say, okay, I don't need to do anything anymore, because I don't think we're done yet. As long as the person who's asking the question has an immune system, it's going to attack the brain and spinal cord. Now, maybe not as much, but it's going to do it. And as long as the person who asked the question has nervous features, they like, like seeing, smelling, orgasming, walking, stretching, yawning, reading, then, then it's my intention to, to keep fighting to make them live their best life despite having ms, even if they happen to have had disease activity. That's quiet for a little while.
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C
You talked about sort of misconceptions and I wonder if, if there's a disparity in that term benign amongst neurologists.
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A
I think it's. I would do well if we threw the term out because I think it breeds laziness amongst neurologists. Oh, you're benign, honey. Don't worry, it's benign. Well, to me, that's a recipe for let's not pay attention, let's not look for fear that we might suddenly not be benign. So I would rather remove the term. And if someone is fortunate enough to have quiet disease, maybe it's because they've been working their tail off.
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C
Would you have some advice for trying to get the best out of conversations or discussions with my neurologist?
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A
Yes, this is an outstanding question. This is a very, very important question. So in order to answer the question, we have to first lay out two pieces of groundwork. The first piece is that your relationship with your Ms. Neurologist, or clinician for that matter, is intimate. It's an intimate relationship. Now, intimate doesn't mean sexual, but it means intimate where you're gaming out how to live your best life despite having this Ms. You're telling the Ms. Neurologist things you don't tell your spouse or your priest. You're discussing, literally bowel bladder, bedroom, I mean very, very intimate things. And so that we have to first of all recognize the tenor of the relationship. It's not casual, it's not professional, it's intimate. The second thing that we have to keep in mind is for you, this is the one time that you're going to see your neurologist and fill in the gap months. In the United States it might be three months, in the UK it could be once a year. My point is that whereas the neurologist is seeing you and you're seeing the neurologist, it's not the same experience because you've waited for a year and the neurologist is going to see 25 people that day. So you're entering into this intimate conversation from a different position. Right. And so if we can keep those two things in mind, we can game out what we need to do. First of all, time is extremely valuable and there isn't a lot of time for chit chat. When the neurologist says, how are you doing? Saying I'm fine, which is a culturally polite answer, is actually inappropriate. It's a waste of time because we're not doing the how are you? I'm fine, how are you? Oh, I'm good, thank you. Would you like some tea? We have to jump into a very intimate conversation about the fact that you're wetting your pants or can't achieve orgasm or are at risk of losing your job, God forbid. Right? So, so we have to be aware of that. So here's step one. Write down every single one of your medicines in all of the current doses and when the refills are due because you know darn well the doc's going to need that. And if you have to futz around, you're wasting time that you could be spending doing something else. So just have that ready. Second of all, write down all of your questions, write them down on a piece of paper and number them. Question one, question two, question three, question four. And when you arrive at the doctor's office, say, hi, Dr. So and so I have five questions to ask you. That requires the doctor to then let you answer or ask five questions. Culturally, it sets up a discussion where I, as the doc, am now on the hook for five Questions. So by setting that up and by showing him the paper. So I wrote them all down, I have these questions. I want to go through these questions with you. That's a way of making sure that you get that taken care of. Another tool is to bring a set of ears with you. So what I mean by that is bring a spouse, bring a village member, bring a best friend. The reason is because it's an emotional discussion and sometimes you can get befuddled and forget stuff or not remember stuff. And so even though I'm going to recommend that you take notes, let your friend do that, let your spouse do that, let your spouse say you forgot to ask question number three. Remember question three, you wanted to ask him. And then your spouse can later help you process or your friend, your village member can help you process what was discussed. So those are just a couple ways that you can make best use out of that visit is requires planning. I'll share something with you. So Sundays are my day to get ready for my clinic. I spend the majority of Sunday prepping visits for next week, which means I read through your note, I read through your chart, I look at your old MRIs, I put together the questions that I want to ask you, I put down the things that I think we're going to need to do. In other words, I am preparing to meet with you. Are you preparing to meet with me? Are you doing anything? So, so when I get ready for the visit, I shower, I shave, I put on dress clothes, I'm being serious, and I attend the clinic. What are you doing? So are you, are you ready to engage in an intimate conversation? These are all steps that I think are necessary to get the most out of that interaction.
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C
How common an occurrence is brain atrophy in Ms. And are there DMT that specifically address brain atrophy and, or can early treatment diminish atrophy progressing?
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A
This is a very important question. We should star it and circle it. First of all, words matter. The word atrophy is a word which means shrinking or shrinkage. You may have noticed that as we age we get shorter. I used to be six, seven. No, I'm joking. That's not true. As we age, we get shorter, our skin gets thinner. You may notice that, you know, as, as we age there's some changes to our body. One of the changes to our body is after the age of about 18, the brain is pre programmed to shrink a little each year. It's supposed to. So there's planned brain atrophy. Now in the setting of untreated multiple sclerosis or unfortunately undertreated multiple sclerosis. We can see brain atrophy which is happening too quickly. It's accelerated brain shrinkage upwards of 10 times the normal rates. Now that's an extreme example, but it can happen in the setting of Ms. Brain atrophy is one of the best correlates to long term disability. A brain that's shrinking too fast is prognostically scary or bad because the fear is that that person's not going to fare well down the line. So I share all that because I want to get everyone on the same page as far as like, you know, what the weird scientific words mean. And the reality is that there are behaviors that we can take which accelerate brain shrinkage. They make your brain get smaller, faster and there are behaviors which slow brain volume down. Now overcoming Ms. Is, is a powerhouse of lifestyle and really teaches what you can see. My cat, sorry, teaches a best practice for lifestyle management. And many of the tenets of overcoming Ms. Help slow brain volume loss. And so we're going to go through some of them today and then we'll get into the discussion of medicine. But we don't start the discussion of brain volume management with medicines. We start it with lifestyle and behavior, in my opinion. So the first thing is people impacted by Ms. Must exercise if they're going to live their best life. And in specific exercise slows brain volume loss. So it's like a freaking medicine because if you exercise then you're going to have a larger brain at the end of your life compared if you didn't. In the setting of ms, that's super, super important. Secondly, what you eat matters in a pro inflammatory diet accelerates brain volume loss. So, so if you were to make one change to slow brain volume loss, it would actually be to cut out sugar as opposed to taking a disease modifying therapy. Like if I, if I had to pick one thing I would really like address diet, I would supplement low levels of vitamin D because that slows brain volume loss and I would cut sugar out of the diet. So my point is there's a bunch of behavioral things that we need to be doing to slow brain volume loss. Not smoking is the biggest measure to slow brain volume loss. It turns out that smoking really speeds up brain volume loss quite a bit and not smoking slows it down. Now the question was are there ability of Medicines, Ms. Disease modifying therapies to slow brain volume loss? And the answer is slow some of them. So some of the Ms. Medicines, some of the older Ms. Medicines like the injectable drugs that came out in the 90s, like the interferon products and gluteer Mr. Acetate, they're not very good at slowing brain volume loss. Unfortunately, it's not one of their strong suits. But there are some Ms. Medicines, particularly some of the newer medicines. Some of the newer pills like Tariflutamide, Fingolimod, some of the in infusions, some of the B cell depleters, Alan Tuzumab, some of these are remarkable at slowing brain volume loss. They're really, really good at it. And so the last part of the question was, what about if you do it early? Well, the earlier you do it, the better. So, you know, what I like to remind families is I want you on the most effective medicine that you're comfortable with as early as possible, and I want to make sure it's working because the earlier I put you on that good stuff, the, the faster we slow brain volume loss. And essentially we're preserving the reserve, we're preserving the neurological reserve, and so the earlier the better.
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C
Okay, so what type of MRI scan is required in order to show the rate of brain atrophy? So leading on from that previous question.
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A
That'S a very good, that's a very good question. So the MRI machine takes an expensive picture of structure. It takes a picture of the structure of your brain. It doesn't look at function, it just looks at the structure. If you took a photograph of a basement, you don't know what's going on necessarily in the basement, but you know, the walls and the structure of the basement. When you're doing a brain volume assessment, it's very important that the MRI is obtained in the right manner, because if you obtained it incorrectly, then you can't do the assessment. And the, the, the punchline is you need a brain MRI that does not skip any part of the brain. So believe it or not, when you have a community standard scanner here in the United States, we talk about community scanners, which is code for like, they're kind of fast, you know, they want to get you in and out quickly where they're efficient, you know, and maybe cost, you know, cutting costs a little bit. And in those scan, oftentimes, they'll collect a 5 millimeter thick slice of brain and then skip 3 millimeters and then do another 5 millimeters. So they'll cover the whole brain in 25 slices. And you're, you're literally skipping. There's gaps in the, in the information collected. So you can't do a volume assessment on that because you don't have enough information. What you need is no gap. So, so the MRI, for example, that we use at my center, it's 1 millimeter cut. So they're really thin cuts and they're, it's 155 to get through the whole brain because there's no gaps. So you can't hide anything from me. I tell my patients, you know, you can't hide a spot because we're not skipping anything. And when you have a complete capture, then you can do a brain volume assessment. Now there are what I like to call poor man assessments. You know, that without fancy software. And so the trained neurologist can look at the width of the third ventricle or the space between the thalami, which is the same place, and you can measure that. And that's actually a reliable way of kind of looking at brain volume. So before I had fancy pants software, I was able to at least get a gestalt based on measuring the third ventricular width.
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C
Cool. What advice would you give to somebody who has an MRI but has, you know, kind of like sort of lower grade, you know, kind of not the gold standards.
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A
I think first of all, it matters whether or not the neurologist has the savvy to use the information. And I'm not trying to be silly, but who wants to spend a month's pay for a fancy, fancy MRI that the neurologist doesn't care to read or is not going to use? Right? So for example, in that instance, it might not be the best use of resources. I would start by talking to the neurologist and saying, hey, listen, if I get a really high end mri, are you going to use the information? And if they say no, I want you to use that hard earned money doing something different. Right. You may find that the neurologist could refer that person to an academic center. A lot of times the academic centers, they spend a bit more time and attention to the way they obtain their MRIs. And so you might be able to get sort of a higher end scan, given the choices here. Where I practice in Ohio, if it's within budget, I'm going to get a 3 Tesla MRI, which is kind of a high field MRI. And I'm going to get with all the whistles and bells and I'm going to measure your brain volume. The only time I don't do that is when you can't afford it. So if it's not within budget, then that's not appropriate. If we have to pick between like, like rent in the scan. We're going to do rent.
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C
So my initial diagnosis was relapsing, remitting Ms. And I was prescribed aubagio. Aubagio, okay, cool. A few months ago, my diagnosis was changed to secondary progressive Ms. I haven't seen a neurologist since the change of diagnosis and I'm still taking Aubagio. I believe this drug is specifically for relapsing. Remitting. Should I keep taking it or should I see my neurologist to discuss coming off this drug?
- [18:48]
A
Excellent question. Very, very appropriate. The punchline is don't you dare stop a baggio. That's the punchline. So let's unpack this excellently discussed question. First off, this is a contemporary situation. This is someone who's diagnosed in the pandemic era. We did not do Ms. Diagnoses the way that we wanted to during the pandemic. We were not able to sit in a consultation room with a family and spend a couple hours and hold someone's hand and walk them through the process. On the contrary, we were delivering messages like, you have ms, honey, across the interwebs. And so I am sensitive to that. It also suggests to me that there may not have been adequate education around surrounding the time of diagnosis. I don't know that this is an inference that I'm making. And the person shares that they have the most common form of ms, which is a relapsing form of Ms. So notice that I chose not to say relapsing. Remitting. I opted not to say relapsing or remaining because it's a misnomer. Relapsing remaining suggests that there's periods where the disease is quiet, which is false. And so I think it's more accurate to call it a relapsing form of Ms. Now, relapsing forms of Ms. Include clinically isolated syndrome, the first attack, relapsing Ms. When people have attacks, and then secondary progressive ms, which is nothing more than a phase of relapsing Ms. Where people have less frequent attacks and more frequent progression. The reality is it's a spectrum. So, so we amongst humans call someone under 13 a child and we call someone 13 to 18 a teenager, and we call someone who's 18 to say 21 a young adult. But in reality we made all that up because there are situations where a 13 year old is an adult and there are situations where a 19 year old is a kid. And so it's the same thing with these Ms. Phenotypes. We draw a Line in the sand and say, now you're secondary progressive Ms. Yesterday you were relapsing and that's frankly false. It's inaccurate. Aubagio is a very, very good drug for relapsing forms of Ms. In fact, Abagio, in my opinion, is more appropriate in progressive disease states than in relapsing disease phases. Allow me to explain. A Baggio decreases the attack rate about as good as interferons. It's not very impressive. It's okay. Aubagio decreases new spots on the MRI in a moderate fashion. It's good, not great at it. Abagio, however, is very, very good at slowing brain volume loss, amongst the very best drugs at doing that. And Abagio is really good at slowing progression of disability. So in this situation where the person says, I have a relapsing form of Ms. And now they think it's secondary progressive, I want them on a baggio. I think that's an outstanding drug for them to be on. Would I stop the drug? Absolutely not. I would not. I would continue to take it and I would leave it in the background because I think it risks doing some really, really good things.
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C
Is Ocrevus going to continue being a twice yearly drug or is the science saying that you can take less or a different amount over time? And is it safe to become pregnant less than 3 months post infusion with Ocrevus?
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A
Great question. Now this is a rather advanced question and multi parts, so let's deconstruct it. First of all, Ocrevus is the trade name for an Ms. Medicine called ocrelizumab. I didn't make up either word. Ocrevus is the most prescribed Ms. Medicine in the world for multiple sclerosis. It's an infusion which is given in the vein. There's an IV in the vein and the medicine is run in it's and it's running every six months. And so the first question is, does it really have to be given every six months, Aaron, or could we give it differently now? The, the European label and the American label stipulate every 24 weeks, every six months. And what we've learned during the pandemic is that not everyone needs reduced exactly at six months. Some people probably need reduced a little sooner. And there are people that could probably go longer before they need reduced. And as it stands right now, I have not seen any investigations attempting to change the labels to change the frequency that we dose people. I will share that. Many times in my practice I've tried to give it more frequently because there's a wearing off among some patients and the American healthcare system, I'm told no, the insurer is disinclined to pay extra. There are situations where because of an increased risk of infection, we may not give someone their ocrevus exactly at 6 months. We may delay it for 9 months or even 12 months. Now, will that become standard of care? I don't know yet. I want to remind the person who asked the question that when you study a drug every six months, you generate all the data based on giving it every six months. And so if you change the dosing, you're really no longer on the reservation. And that doesn't mean that's bad. It just means you can't make assumptions. Where I would like to finish the answer is in saying that this is works in progress and it's works in evolution. And it's exciting that this is a very, very dynamic field where we're constantly challenging how we do things. And, and I love the fact that someone with the disease is so in tune to what's going on. Now, the last question is about pregnancy and the. We have to answer the question keeping in mind the way that ocrelizumab works. So ocrelizumab is an antibody which sticks around in your body for four and a half months after you get the infusion. So if you got the infusion and then attempted conception, three months later, you still have ocrevus antibodies floating around, which I don't recommend. What I would prefer is that you practice intercourse with contraception because as my mother used to say, practice makes perfect. You want to make sure that you know how to do it really, really well. But I would still use contraception until month four and a half. At month four and a half, I think you could take the proverbial condom off, because now if you were to become pregnant, you're no longer exposing the, the fetus to antibodies. Now, the other thing that I want to say is this is a conversation that you must have with your clinician. You can't say, well, I was on a webinar with Dr. Boster and he said it was okay. So I'm just teaching you the information so that you can then have a conversation with your doctor.
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C
Fabulous. I was going to say, it sounds like, you know, that kind of ongoing dialogue with your healthcare providers and, you know, your team.
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A
It gets pretty, it gets pretty detailed and there's a lot to consider.
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B
Living well with Ms. Is listener supported. If you would like to help the charity create more episodes and other resources please visit donate.overcomingms.org check out overcomingms.org fundraise for more ways that you can fundraise.
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C
For overcoming Ms. Having been diagnosed as an Ms. Related focal dystonia, treatment options have been quite limited. So there's occupational therapy and now experimenting with Botox injections. Are you familiar with or had any success with any other treatments for Ms. Related focal dystonia?
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A
Yes. So again, words matter. So dystonia is Latin root, which means sort of an abnormal posture. So I'm going to imitate. So you can imagine someone's hand is in like a twisted dystonic posture and they don't want it to be like this, but they kind of can't prevent it. Or, you know, you can have a dystonic movement of like, of any muscle for that matter. And it's typically painful and an Ms. Can cause dystonias and it's difficult to treat. So. So things that can be done, physical therapy is the mainstay. Botox is a mainstay. Another treatment that one might see is phenol injections. If I may give some advice, the physical medicine doctor oftentimes referred to as a physiatrist or PM and R doctor is oftentimes very, very adept at managing dystonias. Also, the movement disorder neurologist is a neurologist with subspecialty expertise in movement disorders, including dystonias. I bring this up because it's possible that the general neurologist or the Ms. Neurologist caring for you may not have expertise in managing dystonias to the extent that the movement disorders doctor or the physical medicine doctor does. So if you are doing PT and you're doing Botox and you're not winning, I think it's fair to say. Is there a group that would be able to give me a once over and I would have a low threshold to send someone for that kind of evaluation.
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C
Somebody's asked that they would like to know whether there are any new treatments for bladder dysfunction, especially urinary frequency.
- [28:38]
A
Oh my goodness, yes. And so there's a host of things that can help. And we'll take bladder frequency as the example. All right, so when we think about bladder in ms, there's typically one of three problems, the most common being what we call overactive bladder, where the bladder, which is like a bag full of urine, spasms down to the size of a racquetball and the spinal cord having been damaged is not always informing the brain that the bladder is filling. How fun. What ends up happening is you have half of a T and your bladder is full and about to burst, and you have seconds to get to the bathroom. You have urgency, which is a polite way of saying, oh, Lord God, move. You have frequency, meaning, I just went and I got to go again. You have nocturia, which is doctor talk for I'm waking up more than twice a night to go potty, and you're having accidents because you can't get there in time. So it's miserable. And upwards of 70% of people impacted by Ms. Have that stuff. So very, very common. It's one of the very best ways of destroying an adult's quality of life is to make them wet themselves at work. Like, quite literally, it's just abominable. And so I've had situations where a patient refuses to attend work. They're not going to go, just simply not happening. And you can imagine the impact that has to the patient and to the family. So let's talk a little bit about what we can do to manage overactive bladder, because there's a bunch of things that we can do. The very first thing we can do is we can pay attention to things that worsen the bladder. Alcohol is a bladder irritant. Caffeine is a bladder irritant. Is it wrong to enjoy coffee and beer? Well, I hope not, because I love both very much. But if you're having bladder problems, we may need to take that into consideration. And we may need to, for example, shy away from caffeinated coffee. Or we may need to alternate caffeinated beverage with glass of water. Caffeinated beverage, glass of water. You do the same thing with alcohol. So we have to be aware of things that worsen the bladder. If you are not drinking fluids, like shying away from fluids, you may be thinking that you're helping your bladder. You're actually making it much, much worse. Much worse. Because if you are dehydrated, you have concentrated urine. Concentrated urine is irritating to the bladder wall and a fantastic location for bacteria to grow. If you, on the other hand, are constantly flushing the bladder, yes, you have to go potty, but you're constantly washing away the bacteria and you're keeping the urine dilute. So there's less spasms in near moments of, oh, my God, I think I'm going to pee myself. So paying attention to what you drink and what you don't drink matters a whole lot. Most Americans run around dehydrated, and you can help bladder integrity simply by upping your water game. So. So we want women to consume 100 ounces of water a day, which is a lot of water. And I apologize, but I don't have the metric conversion in hand. In men, we need 120 ounces of water a day. So that's not a small amount of water. And if you were to make one change to help overactive bladder, it would actually be to increase your fluid intake. Now, the second thing that we can do is we can time our voids. And this is really powerful. So think about if you're listening to me and you and you have a child, you know exactly what I'm talking about. So when you're. When your munchkin doesn't yet sense their own bladder, you would say, okay, Johnny, go potty. Because it's been an hour. And because Johnny hasn't gone potty recently. And you know, Johnny must need to go to the bathroom. And Johnny says, daddy, I don't have to go, and say, we'll go anyways, Johnny. So Johnny sits in the toilet, and then you listen and he tinkles. All right, he had to go. Even though he didn't know he had to go. He couldn't feel it because he's only three. So when Johnny gets old enough, he starts to sense his own bladder and so he can self regulate. He says, I need to go to the bathroom or I don't. Well, in the setting of ms, you can lose the feedback. So you lose the feedback that you need to pee. And what happens is you still are like every other adult. You wait until you think you need to go and then you meander over the bathroom. But what's happened is the bladder spasm down the size of a racquetball. And it's been. It's been filling for the last two hours and you didn't know it. And you don't have time to get your underpants down before, you know, the dam breaks. So here's the secret plan. Time your voids the same way that you did with little Johnny. At the top of every hour, go sit on the john. You might say, I don't think I need to go. Well, I'm not asking if you think you need to. I mean, the whole reason you're going is because we're not sure. So go sit on the toilet, and if nothing happens, okay, go back the next top of every hour. And what you may find is between one and two hours. Surprisingly, I'm full. If you can constantly keep emptying the bladder, you're never going to. You'll never, never, ever have an oh, no. Moment. Because you'll constantly be emptying the bladder. It's very, very useful. Another tool is to drink 2/3 of all the fluid you're going to drink in the first half of your day. That involves drinking a big glass of water with breakfast and a big glass of water with lunch and a big glass of water with dinner. Drinking a glass of water between breakfast and lunch, in between lunch and dinner, that's 100 ounces. And that way you put a kibosh on fluids after the dinner hour. Now you don't want to walk around at night, Glenn, you know, but, but at the same time, if you've done a good job of drinking water all day, you're not going to be tired of fluids, you're not going to be thirsty, you're not going to be dehydrated, you're going to be in ship shape because you were drinking fluids. Why is this relevant? Because you make urine for six hours after you drink fluids. So if you're drinking fluids up until the bedtime and you put the water at the bedside table, you're going to make urine for six hours while you're trying to get restorative sleep. Now lastly, there is a pill for that ill. And in the United States we have these commercials. Got to go, got to go right now. And there are these bladder commercials for pills that expand the bladder neck to a normal size. And they're very, very useful in managing overactive bladder and Ms. And so we give them to patients with frequency so that they don't have to sprint to the bathroom.
- [35:15]
C
What do you think about ldn? So that's low dose naltrexone?
- [35:19]
A
Yes.
- [35:20]
C
On top of a disease, three out of three on top of a disease modifying drug.
- [35:24]
A
So again, a very advanced question. So first of all, disease modifying therapies are therapies that we believe slow the natural history of Ms. So there are therapies that have been proven that if you take them, you have less attacks and less new spots and less disability progression. That's what a DMT is referencing. The person says, what about low dose naltrexone summarized as ldn in addition to taking a dmt? So low dose naltrexone. Naltrexone is a drug that's invented to block opium receptors, so pain receptors. So naltrexone reverses narcotic overdose. Low dose naltrexone has nothing to do with narcotics. It's a dose which is lower than what's necessary to help with narcotics. But there is Some science to suggest that low dose naltrexone may have some immune properties. Now, low dose naltrexone is not adequately studied in Ms. To be approved by any, any government in the world. No, no regulatory body identifies LDN as a viable treatment for Ms. But many, many patients and some doctors think that there's value to taking ldn. And so what do we do with that information? Because we can't go to the science, you can't look up the paper that gives you the answer. Well, I have three rules to answer that question. And there are three rules that I apply to anything that's not allopathic. So I'm an md, I'm an allopathic doctor. And when I tell you about a dmt, I can say with authority because it's been studied. So if it's a non allopathic medicine, we sometimes the United States refer to that as an alternative therapy or a complementary therapy. So the first thing is, just because it's alternative and complimentary doesn't mean it doesn't work. It just means I don't know about it. Right. So acupuncture is considered alternative in the United States. It's standard of care in China. Right. And I don't know about it, so I'm not gonna tell you it doesn't work. I'm just gonna tell you I don't know about it. So when we're dealing with ldn, which is an example of a complementary or non allopathic therapy, three rules. Rule number one is it can't be too expensive. And LDN is not that expensive, at least in the United States. It's very, very cheap to have made pennies on the dollar. So you as an individual have to determine whether something's too expensive for you. But it's not fair for it to be too expensive because we can't prove it works. The second thing is it can't be dangerous. You know, so just because something is natural, you know, cyanide is natural and it'll kill you, you know, nightshade is natural and it'll kill you. And so we have to make sure that it's not dangerous and LDN is not dangerous. In fact, I think it's probably near impossible to hurt yourself with ldn. So the third thing is it needs to be in addition to stuff. I know that works. So not instead of, but in addition to. So if the person phrase the question, I want to take LDN instead of a dmt, I have an issue with that. But if you tell me that you want to take LDN in addition to a dmt. I am more than happy to do that because it doesn't violate any of my rules. It's not expensive, it's not dangerous, and it's not instead of something that I know works. Now, if you take LDN and it helps you, I am tickled. And I want you to tell me about it so that I can tell other people.
- [39:00]
C
Is there any medically accepted evidence that a cold water swim or even shower is beneficial?
- [39:07]
A
So, interestingly, I just reviewed this literature not because of ms, but because I was wondering whether I should take a cold shower. And there's no compelling evidence that it helps your health long term. But there is excellent evidence about attention. Now, in the setting of ms, a lot of people have difficulties with attention. And so if a cold shower kind of snaps you into attention, I think there may be some value there. I will share with you anecdotally that after researching it, I decided against it.
- [39:39]
C
Would you say immune constitution therapy has the potential to cure Ms. In some cases?
- [39:45]
A
Ah, this is a very lovely complex question. So first of all, what is immune reconstitution therapy? So when we talk about disease modifying therapies, medicines that can alter the natural history of ms, they have different mechanisms. They work, you know, some work differently than others. So the immune reconstitution is a way of rebooting the immune response. Excuse me. So a lot of Ms. Drugs work by blocking cells, you know, like they create a barrier or by murdering cells that kill them. So immune reconstitution therapy is different. It reboots the immune system to change the behavior of the immune system to knock it off. Right. So the analogy that I'm fond of using is my dog river, who is, you may have heard snoring at my feet during our presentation. And so when river was a puppy eight years ago, she thought it all the rage to jump on the couch. You know, she loved getting on the couch and dad didn't want her on the couch. So when I found her on the couch, I would snap her chain and say, no. And I'd pull her off the couch. And every time she jumped on the couch, no. And I'd pull her off the couch. So eventually river, as a puppy, learned that getting on the couch is not the thing to do. It's very bad because dad gets mad at you and he yells and he rips you off the couch. So river learned not to get on the couch. Now noticed I didn't shoot my dog. I didn't burn the couch down or give the couch away to the neighbor. I didn't dig a moat around my couch. I trained my dog to knock it off. Now every once in a while, I come home and my dog's on the couch and I remind her once and that's it. But by and large, she doesn't need a reminder because I've changed the behavior of the dog. That's the way that immune reconstitution therapy works. It works by rebooting the immune response so the cells that are attacking your brain do it less often. And then we turn our attention to is that a cure? And the answer is absolutely no. It is not a cure. But it can create remission. And so remember, words matter. I don't use the word cure casually, ever. And I don't use the word remission casually. The word remission, based on the oncologic definition, the cancer definition is when you have no discernible disease activity in the absence of treatment for five years in cancer. Someone, God forbid, has a cancer and you give them chemo, you treat their cancer, and then they don't have any more cancer. Five years later, they haven't had any chemo and their cancer is not back, they're in remission. The definition of remission does not mean cure. The cancer could return. Right? So when you give someone a medicine like tysabri or ocrevus, which are high efficacy medicines and they have no disease activity for five years, that's glorious. That's reason for celebration. That's not a cure and that's not remission, that's treating ms, which is great. But if you use immune reconstitution therapy, Mitoxantrone, cytoxan, off label, Limtrada, that's alemtuzumab or cladribine, that's mavenclad. You can reboot the immune system. And if the person goes five years without being retreated and has no disease activity, I write in the chart remission. And given that I started to use lemtrada alemtuzumab in 2015, I have several patients where I wrote in their chart, they're in remission, which is freaking amazing. It is not a cure.
- [43:23]
C
Do you know many people who manage their Ms. Just through diet and exercise and do well?
- [43:30]
A
So. So that's a charged question, right? So that's a. And I can only provide a biased answer. So it's my opinion that if you want to live your very best life despite having ms, there are five things that we need to be doing and So I have this saying, I want you to be 5 for 5 in your fight against Ms. Being 5 for 5 is my way of reminding you that there are these five things I need you to do to live your best life. Number one, I need you to not smoke stuff because smoking can speed up Ms. By nearly 50%. And by not smoking we can slow the disease back down. Right now, in reality, it's a much bigger conversation about cardiovascular risk factors. But let's, for number one, we'll just say don't smoke stuff. Number two, I need you to exercise as part of your lifestyle, because people impacted by Ms. Who exercise as part of their lifestyle end up less disabled at the end of their lives compared to those that don't. They handle attacks better, they have less brain volume loss, as we talked about, they have less disability. It's really important. And so when I'm asking you to be five for five and you're fighting against ms, number one is not smoke. Number two is to exercise as part of your lifestyle. Now, number three is to supplement low levels of vitamin D, because it turns out that low levels of vitamin D increase the risk to develop Ms. And if you have ms, low levels of vitamin D drive the disease faster. And so we want to supplement levels of vitamin D to drive them up above 50, below 100. And in fact, there's a much larger discussion about diet behind that in nutrition. And I'll share that. The Overcoming Ms. Diet, I think, is amongst one of the very cleanest and one of the very best. Now, in Five for Five, there's two more in the fourth one is a daily practice of mindfulness. And so in Western culture, I think we all participate. There isn't really a practice of mindfulness which is culturally accepted and it takes us away from ourselves and our families. And I think if you're going to really live your best life with, with ms, you need to practice daily mindfulness. Five minutes, and that's four of five. And I have some patients that are four for five and they're doing the best they can, but they are not doing everything possible to live their best life. They're leaving out something and they're in that. Number five is to take the most effective medicine that you're comfortable taking and make sure that it's working. Now, is it possible that you can do it without medicines? It's possible, but it's very, very unlikely and the statistics are not in your favor. And so I'm not a proud man. I want to do anything known to God and man to make Ms. Boring. And one of those things is to meditate. And one of those things is to eat clean and supplement vitamin D. One of those things is to not smoke stuff. One of those things is to exercise. But one of those things is to take a medicine. And so I would not deny a family that opportunity as I try to bring everything to the table so that we can do the very best job possible.
- [46:44]
C
Thank you again. You know, we're just incredibly grateful to have you on board. And you know, I'm sure that, you know, I speak for everybody and thank.
- [46:52]
A
You know, it's an honor. I am delighted to partner with Overcoming Ms. I think that this is such a powerful organization. You know, it's there's such a strong, unified commitment to improving the lives of people with Ms. Through lifestyle, which I am a big fan of and I very much support.
- [47:11]
B
Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mav Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share, email us at podcast at overcomingms. Org. We'd love to hear from you. The Living well with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.