Welcome to Living Well with 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. In this episode, Dr Boster covers a range of topics, including heat intolerance, when to start a DMT and his tips for self-managing MS.
Overcoming MS 00:01
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 - Your Opportunity to Speak to a Neurologist webinar presented by Dr. Aaron boster. And recorded live in front of our global audience as part of the finding hope with Overcoming MS 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 01:00
So my name is Aaron boster. I'm a multiple sclerosis neurologist in central Ohio here in the Midwestern United States. I decided to be an MS doc when I was 12. Not because my Uncle Mark had MS. But because I watched my family frustrated and not able to contact my uncle's caring providers. And so I promised my mother at that age that I was going to learn to do it better. And I've had a rather directed course through my education and through my career, almost mission driven with a goal of trying to help people impacted by MS live their very best life. This organization Overcoming MS is very near and dear to my heart. Because many of my treatment philosophies that I've developed and cultivated over the last 20 years are absolutely in line with the seven tenets of Overcoming MS. I run the Boster Center for Multiple Sclerosis, which is a standalone MS. Center in Columbus, Ohio, where we care for roughly 1400 families with MS. I'm very proud to bring a very robust clinical trials program. And really, it's an honor to get to care for families here in my hometown. So it's super great to be with you. And I'm looking forward to these questions. So
Liz Waters 02:13
if someone has multiple and innumerable lesions on brain and spinal cord and it's still functional, but slowly declining, for example, increased fatigue, heat sensitivity and cog fog but still classed as relapsing remitting should consideration be given to a less stressful job and stronger DMD.
Dr. Aaron Boster 02:35
So that's an excellent question which touches on the fact that the situations are complex and multiple factors can influence what's going on. So I really would like to divide the question in half and talk about psychosocial stressors. And then also disease modification. Because I think that we can, we can kind of address them in parallel. Nobody goes home at night and says, Hey, honey, let's get stressed out. So that's not a discussion over dinner. And I hate it when clinicians say things like, oh, we'll just remove the stress as if you could like surgically cut it out. The sheer fact that we're having this webinar during an ongoing global viral pandemic, defines a stressful time in everyone's life. So anything that we can do to manage stress is super smart. Both Overcoming MS and the Boster Center for MS embrace mindfulness as the key element in the living your best life despite MS. And I think that's based in the idea that we have to address the psychosocial stressors, otherwise they can make our disease worse, should you step away from a stressful job to a less stressful job? I don't know, I don't know the income. I don't know the financial ramifications to the family. I don't know the accommodations that could be accomplished. But what I hear is, could I game out my work environment where I spend half my day so that I can function better so that I have more energy reserved at the end of my day or what have you. So that's worth exploring whether you leave that job or not. Likewise, we can turn our attention at the same time to disease modification. And what I'm told is that you have neurological symptoms fatigue being the most common MS symptom, and at least in the United States, the leading cause of loss of work amongst people with MS. So I'd say a very important symptom to to game out and innumerable lesions brain and spinal cord, which would suggest a higher risk of worsening disease. So for all those reasons, I would want to place that person on the most effective disease modifying therapy that they're comfortable taking. Now, I've crafted that sentence very carefully, the most effective DMT that they're comfortable with Taking, but I wouldn't want to leave anything on the table because I would want to bring everything to bear. And I think that's a very, very good real world question, thank you for asking it
Liz Waters 05:09
Is that something that you would advise in terms of where somebody feels with their career, if they're feeling really stressed out that, you know, that's a conversation that they can have with their clinician?
Dr. Aaron Boster 05:18
it's a full who thinks that we can fix MS with just a medicine. And I think if the psychosocial aspects of your life are risking impacting the disease, then it's paramount that we talk about it, I'll give you an example. So many, many of my patients work here in central Ohio, in a factory environment, where they have to stand at a conveyor or some type of machine, and they have to do a repetitive task. And it's timed, they can't step away. That can be really, really hard for someone with motor fatigue and heat sensitivity and, and other neurological symptoms. And so sometimes we can request an accommodation. They don't have to leave their job, but they are given an accommodation where they can wear special shoes, or they're allowed to sit, where they're allowed to step away, things like that. And so oftentimes, I can write a medical letter of necessity, explaining the medical recommendation for sitting or a break like that. And that can turn an otherwise really scary work environment. And it's something that works much better.
Liz Waters 06:25
So the next question, I'm wondering what Dr. Aaron thinks about the use of hyperbaric oxygen therapy in MS, a lot of people have told me it helps with their symptoms,
Dr. Aaron Boster 06:35
I transparently don't know very much about it, having never used it myself with patients. So please take what I'm saying with a grain of salt, I don't have an expertise at all. The data is not compelling to me. When I review the data, I'm not struck by remarkable outcomes. Anecdotally, I know that there are places that do it. And I would consider hyperbaric oxygen, the same way that I consider what I call a complementary medicine, something that I wasn't trained about, which doesn't mean it doesn't work, it just means I wasn't trained about it. So the three rules that I apply to those situations are very straightforward. It can't be too expensive. Now, I don't know the cost of entering a hyperbaric chamber. But if it's too expensive, that's not fair. Because I can't look you in the eyes and promise you that it can work right? In only an individual family can decide for themselves if something is too expensive or not. The second thing is it can't be known to hurt you. And I'm unaware that a hyperbaric chamber can hurt you. And so that's good. And thirdly, I don't think it should be instead of something that I know works. So if a patient said to me, Dr. B, I'm going to stop my disease modifying therapy, which I've been responding to, then I'm going to start doing hyperbaric oxygen, I would be concerned about that. Whereas if they said, Hey, Dr. B, I'm going to continue the therapy that's been working, and I'm going to add hyperbaric oxygen. In that second situation, I would say excellent. Let me know how it goes. If it's helpful, tell me about it. So I can tell other patients
Liz Waters 08:11
Does Primary Progressive MS have any chance of getting better with stem cell, I'm on Ocrevus, but still have balance and walking issues and wanted to see if I can do any better.
Dr. Aaron Boster 08:22
This is a very hot topic. stem cell transplantation has gained increasing steam and momentum. The National Health Services in the UK now have a path where people impacted by MS with severe disease can have a stem cell transplant. Here in the United States where I practice, that's not something that's commercially available through the third party payer insurances or through American government insurance yet. It's not FDA approved. It is available through research endeavors. And and I think that we can't ignore stem cell transplantation. Now I have done a handful, four stem cell transplants in the context of a big research trial that I participated in. And this was many years back and we we're still learning and the results were kind of plus minus. In my practice, currently, I have a handful of patients who have had stem cell transplants, most of them actually out of the United States in Mexico. And one gentleman in particular has Primary Progressive MS. And without question he has improved. Remarkably, however, it's the only time in my career that I've ever seen that. And so I'm being transparently honest that anecdotally I have seen one person that had a remarkable benefit, which is amazing. But I can't in good faith say absolutely for limited time only if you sign up now for 9.99 That can be your outcome as well. I still think that it's appropriate to continue to study stem cell transplantation and I don't think that it's primetime just yet for progressive disease, although I think that we're actually really, really close. Your point is well taken, you have a condition, you're taking the therapy, which is currently available for it and you feel like you're slipping. And I just want to caution you against false hope. Because sometimes, the claims of stem cell transplantation are almost magical or sexy. And so I do want to temper that. I have seen other patients that have had stem cell transplantation and they've not fared well. And so I think I'm the jury's still out.
Sian Southward 10:35
So somebody's asked what are your thoughts on Tysabri during pregnancy and breastfeeding,
Dr. Aaron Boster 10:41
So I allow women in my practice to conceive while taking Tysabri so they can have unprotected intercourse with the goal of becoming pregnant while taking Tysabri infusions. I feel that it is safe to continue Tysabri for the first trimester. However, after the first trimester when you enter into trimester two and three, if we continue Tysabri, there is a risk of anemia to the baby. And that obviously we want to avoid, I have helped several women in several families conceive in this manner, where they became pregnant on Tysabri and then stopped in the second trimester and things have gone well. And so I think it's a very viable option. I don't recommend breastfeeding on Tysabri. Although transparently, it hasn't been an issue for the women because of their own personal decisions. And I really think that it's it's an evolution in our understanding our MS neurologists understanding of these medicines. I remember when I was a younger man with hair, that we wouldn't allow a woman to consider conception on an interferon injection or on a Copaxone injection. And in hindsight, I feel so sad that I took women off those drugs, so they could conceive and in some cases had disease activity. Now, we may place someone on one of those medicines to become pregnant. And my preference, because of the high efficacy is to place someone on Tysabri. So that's my maneuver to become pregnant, so that we don't have to take you off the therapy.
Sian Southward 12:23
Is there any medication that you would recommend for somebody who uses a wheelchair, has been following the Overcoming MS program for five years, but has recently had a stroke, which has been affecting their vision?
Dr. Aaron Boster 12:35
So the reality is that question is too complex to give an actual answer on the interwebs. The reason I say that to you is I don't know the type of MS, the duration of the MS. I don't know the history of attacks in the history of new spots, how frequently we've seen those, how long we've been in a chair, the transition from if there was a transition from walking to cane to walker to chair, I don't know the rate of that transition. I don't know what meds they've been exposed to, and how they respond to those meds. And so those are all elements that go into that answer. Similarly, there's different kinds of strokes, there are strokes that are bleeds, and there are strokes that are ischemic. And the treatments are different for both the risks afterwards are different for both. And it most certainly can influence medicines. And so this is a situation where we, we need to recognize the complexity, right? We need to consider the variables. And then it's only through those those all those variables on the table that this person with their clinician can navigate together to come up with an answer my guess and we don't want anybody guessing. But my guess is there is a path where we could do something to treat despite the recent stroke. But again, it's there's a lot that has to be considered to answer that properly.
Sian Southward 13:52
Do you have any experience of discovering brain cysts on patients routine MRIs? If so, do they need treatment? This person has said that their latest MRI scan showed they have a small arachnoid cyst in their left cerebral fossa.
Dr. Aaron Boster 14:10
So what's a cyst? It's a little bubble, you know, like a bubble of tissue. And so when you do an MRI, you're taking a very, very detailed picture. It's like looking under an extremely sensitive microscope, where you can see lots and lots and lots of details of things. And you'll pick up variations in human anatomy, variations in the structures of people's brains. And sometimes people have cysts. There's lots of different cysts that are named, like we've described them in the medical literature and they're benign, they mean nothing of importance. And we just noticed them because we have this really powerful MRI that can see all this stuff. So then the problem becomes a least in the United States about 10 years ago, a bunch of hospital administrators thought it was a brilliant idea to transparently show all patients all reports. What they forgot was doctors go to doctor school to learn to interpret the reports. In at Doctor school, we learned that the cyst isn't relevant even though it's listed, even though we can see it, we know that that's not concerning. But when the patient sees the report doesn't go to doctor school, they just say that there's the cyst, and it scares them. And that's not fair to the patient. So whenever you see something in a report that you're not familiar with, I strongly encourage you not to become emotional yet because you don't have enough information or background. But to reach out to your clinic nurse or your clinician, or whomever and say, hey, they said, there's this arachroid cyst, does that matter? Because they're gonna say, No, it doesn't. Moreover, someone with MS is typically getting an MRI of their brain, at least where I come from nearly annually. And so if the cyst changed, we would see it. So it's kind of a perfect situation to monitor. So even if I was wrong, in the thing was not good for you, we would check we would be seeing that it was changing. And so I think that there's an easy opportunity to scare oneself. I'll give you another extreme example. Sometimes a radiologist is reading an MRI of the brain and they'll say something to the effect of looks like MS can't rule out lymphoma. Well, I know it doesn't look like lymphoma. And I know the patient has no signs or symptoms of lymphoma. The radiologist and the litigious American society was covering his or her tush, you know, by listing that they didn't miss it. But the patient who doesn't go to doctor school reads that and they think it says I have lymphoma, which they don't. So again, no, I don't think that's concerning at all, I just think we need to ask the clinician for some clarification.
Liz Waters 16:57
So I've been taking betaferon since 1994. I've had no change on MRI since 2012. But I'm slowly getting worse with some slight left leg weakness, I'm 65 years old, should I be on a newer medication.
Dr. Aaron Boster 17:14
So this is, this is a good description of someone who has not been having attacks, but they are having what I refer to as PIRA, or progression independent from relapse activity, and Betaseron isn't good at slowing that down. Betaseron is pretty good at decreasing attacks, but it's not very good at slowing down disability progression. So in groups of humans, there are medicines that are better at it. Transparently, we haven't tested 65 year olds. So what do you do with that? Well, what I do with that is I put them on those medicines. So this is someone that I would use a medicine like A B cell deplete her on, because I think that the data for slowing progression is better in those medicines than with Betaseron You know, I do think that there's a trap where you can say, well, I've reached X birthday, therefore, I'm done. I'm done with, you know, getting worse, or treatments can't help me any longer. And that's a that's a falsehood, in my strong opinion. And so I do think it's important to continue to treat. And I do think that we could probably do better than Betaseron in that state.
Liz Waters 18:31
And how would we go about those conversations? What would that appointment look like having that conversation
Dr. Aaron Boster 18:38
depends on geography. It really does. Because the system that a person with MS in Great Britain uses is very different than the system used in Canada. And it's very different than the system used in Australia. And it's really, really, really different than the system that we use here in the United States. And so I can have a conversation with you, for example, hypothetically about what I might do. But I hesitate to do that, quite honestly, we have an international audience and I don't want to risk giving out some type of Aaron Boster algorithm, which simply is not available or appropriate in that system. The punch line here is a conversation with your clinician. And that conversation might sound like this. Hey clinician thanks for giving me this Betaseron on and I'm really happy that I haven't had attacks. And I'm really happy that my MRI hasn't gotten worse, but I have progression without that stuff. And I'm concerned about that. Could we discuss a different medicine for me, please?
Liz Waters 19:45
What would be the optimal washout period for a patient who is JC positive to change from Tysabri to Ocrevus?
Dr. Aaron Boster 19:52
So I don't think that we should do a wash out at all. Zero wash out. The reason I don't want to do a wash out you is a couple fold one, when you stop Tysabri. If you wait three months, which is about the time, you might need to get completely out of your body, you have a risk of a rebound, which is a very nasty experience where you have sort of multiple enhancing lesions and a multifocal attack that oftentimes will land the patient in the hospital, it's very severe. And so we want to avoid that. So we really, I've fallen out of using a washout with Tysabri at all. Now, the concern in the rationale originally for a wash out was a risk of PML. And so in the United States, most commonly, the way that we make a transition is we may stop established and check an MRI brain. And if the MRI brain doesn't show the trappings of PML, then we have a confidence as we start Ocrevus. And we do that as a one two punch. So Tysabri, January 1 ocrevus, February 1, with an MRI in between, as a safety maneuver. Now, many of my colleagues who practice MS neurology in Great Britain, they will add a lumbar puncture. And that's even more a better way of checking because they can look and see if there's JC virus, that's what causes PML in the spinal fluid. So if they check and see no JC virus, they know with profound certainty that that's not a risk. Now, a lot of American MS patients are disinclined to allow a second lumbar puncture or a lumbar puncture at all. And so I don't see a lot of Americans doing that. But but those are the two ways that you can navigate safely. I have transitioned many, many people from Tysabri to Ocrevus. With an MRI in between and I do it as tightly as possible.
Liz Waters 21:41
As somebody living with MS. What do you recommend for dealing with vertigo, somebody says I suffer from dizziness or vertigo on a daily basis.
Dr. Aaron Boster 21:49
Vertigo is a terrible, terrible experience. We define vertigo in neurology as a hallucination of spinning, like so you're spinning or the room is spinning. And it's oftentimes associated with with falling, it's associated with nausea, very, very unpleasant, it can destroy the quality of your life. The inner ears have all of the circuitry to like balance where you are in space, and if they become affected, they can cause vertigo. Moreover, vertigo can be very hard to treat. There isn't a fancy pants pill, which is excellent at knocking out vertigo, the way that we can knock out say other symptoms like neuropathic pain. The best way of dealing with vertigo, and it is rather successful is called vestibular physical therapy. So, these are physical therapists who have gone to do extra training in neurosciences. And they have expertise in dizzy, and so they are masters of dizzy and I have seen them Shepherd patients back into the road to Wellville. And so when I when I have vertigo with the patient, that's what I want to start with. There are some medicines that can be adjusted, but I would say the biggest bang for the buck is to go to the physical therapist.
Sian Southward 23:06
I know that Ampyra is used to improve walking speed, but could it also help with leg stiffness and leg nerve pain? What are the chances of having a seizure whilst on this medication if I've never had a seizure before?
Dr. Aaron Boster 23:22
So that's a it's a lovely question. And it's it's it's reflective of the community of people with MS that participate in Overcoming MS. This is a very very intelligent, multi layered question. I love it. And it also suggests someone is extremely insightful in their own body because they've identified something which is a truism. Ampyra is not a pill to help with walking speed. That's how we tested it. Impure is a pill that helps buttress against motor fatigue and heat sensitivity. So different humans with MS can have different kinds of heat sensitive problems. For example, some people who have had an optic neuritis, which has recovered when they get overheated they lose vision in their eye and they can't see again until their body cools down. And when those people take Ampyra that goes away. And so could someone have an improvement to spasticity within Ampyra ? Absolutely. I've seen that many times. The second question is also very important. Ampyra was invented not as a medicine for people with MS but as pigeon poison to kill pigeons sprinkled on rooftops, pigeons eat it, they seize and die. Right. And so in the same way that Coumadin was rat poisoning, and if you use a small amount of things to humans blood empiric can help stabilize neurons in a very interesting way if you use a low enough dose, but if the dose goes too high, a human can seize. And that's why we can't go beyond 10 milligrams twice a day with the branded Ampyra because it will increase the risk. I can share with you anecdotally, I've had patients that did not listen and took it three times a day despite my screaming and yelling, and the gentleman sees it's terrible. Now the question is, if I don't have a seizure disorder, what's my risk of seizure with impure, and it's a very low risk in the trials, if I remember it increased the risk of seizure by like, 1.5%. Please don't quote me on that. I'm soft, my memory, but it's not a very high risk. And if you're not, if you don't have any other seizure risk factors, no family history of seizure, no history of penetrating head trauma and you're not on any other medicines that can lower a seizure threshold like Tramadol is a medicine that could lower seizure threshold. Wellbutrin is a medicine that can lower seizure threshold, then I really am very much not concerned
Sian Southward 25:50
is it a medication without side effects to reduce inflammation in the body for people on blood thinners for heart disease, for example, Apixaban, or a natural product and foods to avoid that reduce inflammation.
Dr. Aaron Boster 26:06
When a immunologist says inflammation or when a rheumatologist says inflammation when a MS doctor says inflammation, they have a very, very specific meaning. Now, sometimes in common parlance, we talk about inflammation more generally, like I'm all inflamed today, or my joints are inflamed, or we talk about an anti inflammatory diet. Those don't all mean the same thing. And so just for starters, I think we have to kind of clarify when you say an anti inflamed, I'm not I need to know more about like what you mean. Now, let's pretend that you're talking about MS. And the inflammation associated with MS, which is part of the MS is pathology. And we want to use a medicine to treat MS, we have to consider what else is going on with the human. In this example, we have a risk of of clotting our blood, so we're on blood thinners, and MS. And so that's what we have to consider. And it really comes down to understanding drug- drug interactions in pharmacology. I'll give you an example. Right now the world is studying routine tyrosine kinase inhibitors, these BTK inhibitors, these are very, very exciting molecules that are being studied as what might be the next best thing in MS. But they can thin your blood they can there's a risk of of clotting problems. And so I have a patient with MS who is on one of these trials, and he suffered a stroke. And so he's now on a blood thinner. Which disallows him from taking the study medicine, because if you combine them, he would have a higher risk of bleeding. Fortunately, most of the MS medicines don't have any problems like that whatsoever. But that's not the take home the take home is in a complex situation like this, we have to look at all the variables. Now sometimes that involves having a conversation with the stroke doc and the MS doc and the cardiologist and the primary care doctor, everyone putting their heads together so that we can pick the right medicine for that person at that time
Sian Southward 28:05
does having a general anesthetic or epidural cause more risks for people living with MS.
Dr. Aaron Boster 28:12
So neither will worsen MS. So there's an old wives tale that an epidural might worsen MS, which is not true at all, and is now kind of been pushed out of medical lore. There are still probably some anesthesiologist that help with labor and delivery, maybe some guys that are like 90 that don't know that, but but the vast majority of the field has caught up with the fact that it's completely safe for someone with MS to have anesthesia if they need it. That stated, sometimes it takes my patients extra long to come out of the anesthesia or to recover from the side effects of anesthesia, it may take them a little more like a couple more days than the average guy. Not that they can't do it and just we have to be planful and give an extra day or two to bounce back postoperatively now which which procedure is better, really gets into what are you having done and why. And so an epidural or a block, they anesthetize you from say, the waist down and you're awake. And so the upside there is they don't have to intubate you. They don't have to put a tube in your mouth to breathe for you. And that has risks associated with it. They don't have to bring your consciousness down to sleeping and then bring it back up. But you have to be awake for whatever that procedure is. In. There are some of my patients because of problems with swallowing. Because of the MS that going to have a surgery becomes more of a problem. And so typically getting ready for the surgery, you'll have consultation visits with the anesthesiologist and they will make some strong recommendations. Now sometimes the MS neurologist needs to jump in and have a little bit of a chitchat. But generally speaking, they're going to game out the surgical risk of going under anesthesia. Me personally, this is just Aaron's opinion, I would like to do the least amount of anesthesia that I'm eligible for to have the procedure done. So if I could have a block, and this is just me, I would rather have a block than go under general.
Liz Waters 30:14
Can DMTs, for example, B cell depleted does have an impact on food allergies, like gluten and dairy. And if you can use them, can you still test on these allergies? Or could it be the antibodies are suppressed in some way
Dr. Aaron Boster 30:30
I'm not aware of data. Annecdotally I've not seen that be a problem at all. There's a lot of seasonal allergies in the Midwestern United States because we have all these seasons. You know, we have four seasons and each fluctuation people sneeze. And I've never seen a problem with my patients on B cell depleaters. If that was a thing. I think I would see it because I have a lot of Ohioans on BCL two pleaders, but I'm not aware of data to that effect, immunologically, they're very different. And even though it sounds like, you know, it's all immunology, what you're doing with MS lymphocytes and B cells is very different than what happens when you have an allergy like hay fever, it's different antibodies, it's different cells in some respects. And so I don't think they should be a problem.
Liz Waters 31:17
Can you share how your patients who are five for five, doing comparison to those who are not able to manage to do all five, and which of the five are most important,
Dr. Aaron Boster 31:28
So this person honors me, um, you're so kind. When I work with families impacted by MS, I want them to be five for five in their fight against the disease, not dissimilar to the seven tenants we use in Overcoming MS. And so let's go through what it means to me to be five for five in your fight. So number one, in being five for five is not to smoke stuff, because smoking increases an individual's risk to develop MS. And if you have MS, it speeds up the disease upwards by 50%, which is terrifying. If a child of someone impacted by MS is exposed to even secondhand smoke, it doubles their risk to develop MS. And in fact, there's a much larger conversation behind the first tenant of don't smoke, about other cardiovascular risk factors. So if we are not attentive to high blood pressure, and high cholesterol and diabetes, etc, the brain can age quicker and you can get worse faster in the setting of MS. And so that's the first one don't smoke stuff. Now, mind you, and 2023 I say don't smoke stuff, because there's different kinds of things one can smoke. So for example, one can smoke tobacco and nicotine, one can smoke cannabis. In both cases, lighting a carbon based thing on fire and then sucking in the smoke is not in your best interest. So number two, in being five for five involves supplementing low levels of vitamin D, exactly as we discussed in Overcoming MS. And the data is profound that levels lower than 50 increase the risk of a given human to develop MS. And if you have MS low levels that drive the disease faster. Now I live in Columbus, Ohio and the Midwestern United States where there isn't much sun for seven months out of the year. And it's really cold even when there is sun. And so we don't spend a lot of time outside during those months. And so, when I check the average Ohioans vitamin D, it's typically like nine or 10. And I need to get it up above 50. And so you could either stand out in full sun for 15 minutes and risk frostbite to your personal private parts. Or you could swallow a supplement to get 5000 international units of D3 each day, which is the typical recommendation. Now, you can get vitamin D3 through fatty fish, but the amount you would have to eat is un doable. So a three and a half ounce portion of fatty fish like salmon would be about 600 international units you need 5000. So well that's a lot of fish. So we do a lot of supplementation here. So behind the discussion of Vitamin D is a much bigger discussion about nutrition. Again, very in line with Overcoming MS. And, and so I spent a lot of energy talking with families about nutrition and cleaning up their diets. It's number two. Number three is exercise as part of your lifestyle. Another tenant shared with Overcoming MS. And I've crafted that sentence very specifically exercise as part of your lifestyle. So what does that mean? Exercising as part of a lifestyle means that if you do it, you're not rewarded. There's no reward for doing something as part of your lifestyle. And if you don't do it, there's no punishment you're not sent to the naughty corner. So for example, I have a lifestyle of brushing my teeth. I don't tweet about it. I don't make YouTube videos about it. I don't even talk about it when I get to work. It's just something I do every morning and if I happen to forget to brush my teeth before I head off to the office, I'll run upstairs and do it. This is part of my lifestyle. And so I need people impacted by OMS to exercise as part of their lifestyle. And it's, in my opinion, the second most effective disease modifying therapy that exists. Anyone that has participated in Overcoming MS has read the testimonials. And many of you have experienced the profound benefits to MS by a commitment to Exercise and Movement. Number four, and being five for five is mindfulness. And so I'm a very strong believer that each one of us needs to practice mindfulness at least for five minutes every day. Now, I remind us that the definition of mindfulness is to be in the present moment without prejudice. So being in the present moment, not thinking about what's going to happen tomorrow at the office, not worrying about something that happened in the past, but being in the present moment. And at least here in the United States, we train people to do the opposite. So in the US, if you can eat a cheeseburger and talk on the cell phone while driving down the freeway, then you're rewarded for being efficient. And that's abominable. And it increases the risk of depression and a bunch of other nasties. And so I'm a big believer in the daily practice of mindfulness. And that could be yoga, meditation walk in the woods, I'll share with you something that I have fallen in love with doing myself, is I do shower meditation. And after my morning shower, I sit Indian style in my old tub with my eyes closed, and I breathe, but I taught myself to let those thoughts go. And I've gotten to the point where I can just listen to the water and breathe for about 10 minutes. And it's one of the best parts of my day, it refreshes me and it's I can't begin to tell you how impressive it is. Number five, in being five for five in your fight against MS is to be on the most effective DMT that you're comfortable taking. Now, for some patients, that's no DMT, because they are not comfortable taking one and you're an adult, you're allowed to make that decision, even if we're not in agreement. But again, I want to work with you to help you figure out the most effective DMT that you're comfortable with. And that's being five for five. Now, in my experience, anecdotally when my patients adhere to those things, their quality of life skyrockets, they have less attacks, they have slower disability progression, and they have less symptomatic complaints. And if you said Well, Dr. boster prove that I cannot prove that to you, because this is my lived experience delivering MS care to families for the last 20 years. But I think it's still a valid lived experience.
Liz Waters 37:43
Next question. Hi, Dr. Boster, do you have any recommended strategies to support an overall increased tolerance to heat?
Dr. Aaron Boster 37:50
Yes, yes. So there's a lot of adaptations that we can do. Obviously, as long as there isn't a seizure disorder, trying Ampyra is a really good idea. And if you're in the 1/3, to half of people impacted by MS that respond glory be, that'd be a really big deal. So that's one thing. That doesn't work for everyone, unfortunately. And sometimes it's not enough. So then there's a bunch of other things that we can do behaviorally to help. So a cooling vest is a very powerful tool. Now, when I was coming up through the ranks, the only cooling vests that were available, look like these fishing vests, or like, you know, Commando vests, that no fashion forward human would ever wear in public. You know, they're these big, bulky things. And they really weren't amenable to like going to work, but they now make cooling vests that you could wear under a t shirt, and no one would know you have them on. They're completely discreet. They last for hours. And there's cooling, kerchiefs and cooling hats and the like. And so using a cooling vest to drop your core body temperature is really smart. So what else can you do? Well, you can gain out the timing of activities. So for example, if you enjoy a promenade, waiting to do that, in the middle of the day, when the sun is up, might be a major, major problem from a heat sensitivity standpoint. Taking that same walk in the morning before the sun's fully up is the recipe for success. Cooling your body by misters. I have patients in the Midwest that will put a mister over their doorframe and they can sit in a chair on the Mr. And they're constantly having convection and evaporation, who will heat away from them. So there's other ways like that, that we can game out. Another thing we can do is budgeting when we go outside and activities that we can do inside and outside, right. And lastly, we can conserve energy during those times when it's really hot out. So whereas I would normally encourage a patient to park at the back of the parking lot to get their steps in if it's the middle of the day, and that's going to SAP all your energy so that when you get to the grocery store where you can't shop that doesn't really work very well does it? And so that's an example where we would have someone drop us off at the threshold of the grocery store so that you can be successful in your shopping. So aquatic therapy keeps you cool because the water wicks away the heat. And so people that would be unsuccessful in jogging, let's say, or cycling, because they would get overheated. They could walk in the water or do water aerobics or do like water Zumba. And they're not going to get as overheated. And so that's another way of dealing with heat sensitivity.
Sian Southward 40:30
When would you recommend somebody commencing or starting their DMTs?
Dr. Aaron Boster 40:36
I would start a DMT about five to six seconds after I confirm that they have MS. Or I might do it as soon as I'm concerned, they're at high risk of developing MS. So if you have for example, God forbid a clinically isolated syndrome optic neuritis, and you have two spots on your brain. You don't meet criteria for MS necessarily, but you have an 85% chance of having MS. I will place that human being on a medicine and observe them for five years. Because if they go on to have MS. I've helped them I've slowed down brain volume loss and brain damage and slowed their disability. If I'm wrong, then I'll apologize later. And we can take them off the medicine. But you can't do it too early.
Sian Southward 41:22
Yeah, I've had my Octopus treatment postponed. Oh God, bear with me as my lyp H O C T
Dr. Aaron Boster 41:31
Sian Southward 41:32
Thank you. We're too low. Is this common?
Dr. Aaron Boster 41:37
So this gets a little bit nerdy it's a really good question. So when when someone with MS takes a B cell depleting medicine, so that would be like Ocralizumab so that's ocrevus or Ofatumumab which is Kesimpta in the United States. There's a medicine rituximab Briumvi, which just got FDA approved here in United States, rituximab, Rituxan, these are all B cell depleaters. So they're all medicines when you take them, they knock down your B cells. So what are B cells? Well, they're part of your immune system. And they're they're part of the cells that are called lymphocytes. So the lymphocytes are some of the white blood cells, and some of those lymphocytes are B cells. So if you deplete B cells, then the lymphocyte number goes down, right. And so you can see that, if the lymphocyte number goes down too much, there may be a concern of an increased risk of infection. And so sometimes MS will order lymphocyte levels and look at the level. And then they can have a better sense of if this individual human is at increased risk of an infection. Now, at the end of the day, the rubber meets the road if the person is having recurrent infections. And so if someone has a depressed lymphocyte count, or even a depressed IgG level, I may have a more heightened caution and be more cautious if they were to get infected. But if they're not having any infections, I personally am not taking them off the medicine, because we put them on the medicine to slow down their MS. And so if that's working, and they're not clinically having attacks, then Yay, I'm not going to throw the baby out with the bathwater. However, if someone has a lower lymphocyte count, and they are getting infections, that's concerning. And in that person, we may actually have to take them off therapy, or we may have to treat them with a medicine called IVIG, in addition to their B cell depleater, so that we can accomplish both goals of keeping them safe from infection and treating their MS.
Liz Waters 43:40
Hi, Dr. Aaron, what are your thoughts on diet and MS. There are so many thoughts on it out there.
Dr. Aaron Boster 43:48
That is a great question and extremely appropriate for us today. I think one of the most developed and thoughtful MS diets is the Overcoming MS diet. And I also am a very big believer that nutrition is very, very important. MS. The first thing that I think we need to be doing with diet is we have to increase the water intake. So we want 100 ounces of water for ladies and 120 ounces of water for gentleman and that's a lot of water. Most Americans do not drink enough water. And we're really, really dehydrated and increasing water probably has the one of the quickest best benefits seen in MS. energy, mood spasticity, fatigue, depression, they all get better with water. So the second thing that I want to do after we work on the water is I want to make sure that we're getting adequate vitamin D3. D3 is the vitamin D that we get when our Sun hits our skin. Most commonly I'm giving people 5000 international units or 50,000 weekly, and then we can check blood levels to adjust accordingly. So number three, and that's to eat whole food, real food, single ingredient food period to avoid heavily processed foods, fast foods, sugar laden foods, fried foods, diet foods, sodas and foods that have ingredients that you can't pronounce. So I think the most important macronutrient is protein. And I'm of the opinion that we want to have one gram of protein per kilo of body weight. And so for the Americans listening, that's a gram of protein for 2.2 pounds of body weight. And that's a lot of protein. So a lot of guys and gals need to be eating 60, 70, 80 grams of protein a day. So simple carbohydrates should be avoided. I personally have come to believe that sugar is a poison. And I think it should be avoided at all costs. And simple carbohydrates like bread is a sugar. Now in the world of complex carbohydrates, there's one kind of complex carbohydrate that's extremely important. And that's fiber. Fiber is an indigestible carbohydrate. And you need to have a lot of fiber in your diet. 35 grams, 38 grams, if you're a gentleman, and 25 grams, if you're a lady, that's a lot of fiber. Fiber is really important for a lot of like colon cancer risk. But it's also really important for gut health. Here's the dealio. There's a bunch of bacteria in your gut, particularly at the end of your gut in the colon, and they help process your food, they eat your food. And in the setting of MS, we have something called dysbiosis, where you have the wrong gut bacteria. And so that can actually cause IBS, constipation, it can cause malabsorption, leaky gut all kinds of things that are naughty and bad. And you want to make sure that you have good probiotics, and you want to make sure that you feed them fiber, we call that a prebiotic, so fiber, one of the things it does is you can't digest it, and so it gets down to your colon, and it's fermented or eaten by the bacteria. And they make these healthy post biotics these short chain fatty acids like butyrate, which do a lot of really good things to the gut, and I think actually help MS believe it or not. So fiber is really, really important. So number six is the timing of when you eat, not what you eat. But when you eat. Well, here's the problem. When you eat something, it kicks your insulin up. When insulin is elevated in the blood, that's the storage hormone. So if I eat a bagel, my insulin goes up. And my body's being told we have enough energy, thank you. And so if I eat a bagel, and then a couple hours later I eat a Danish. If I'm running while I eat the Danish I will burn it as energy. But if I'm sitting, it goes on my tush as fat to store for later, if you finish eating, for the next six hours, you will burn glycogen you'll burn sugars in your body. After six hours and burning sugars, you either die because you have no energy sources or you switch energy sources to fat and you will burn fat that's called lipolysis. Here's the thing. As long as insulin is elevated that you can't do lipolysis you can't burn fat. If you are spreading your meals out and not allowing that you're gonna gain weight and have trouble controlling body composition. I believe that people impacted by MS are well served by taking a probiotic I do. Now whether that's sauerkraut and kimchi, or whether that's taking a probiotic supplement, I think it's a really, really important thing to do. I also am a strong believer in taking omega three fatty acids, not dissimilar to the Overcoming MS diet that recommends flaxseed oil or flax seeds. The fiber and flax seed is fantastic. And the Omega threes are really, really fantastic.
Liz Waters 48:50
Next question, I struggle with intractable nausea causing serious weight loss. No one seems to understand what's really causing this, but it happens in tandem with other neurological symptoms. So I feel it must be linked to my MS. Do you have any suggestions for questions that I should be asking doctors to help figure this out and find a way for me to eat?
Dr. Aaron Boster 49:11
Yes. So it can be involved in MS. I have seen this before. And there's an area in the base of the brain called the area postrema. It's part of the medulla oblongata. Some funny scrabble words, and if it's impacted by MS or something else, it can cause a problem with nausea and vomiting. So one of the things that I would be curious is when we look at your MRI, whether the medulla has been affected, because if it has then you can point out and say Hey, Doc remember anatomy, like that's why I'm throwing up. Now that's a cold comfort because just because we see that doesn't mean there's something we can do about it. I have seen an acute MS attack of nausea and vomiting which was improved with steroids. But that was an acute thing. Like it just happened. It was going on for a short period of time we gave steroids and it got better. And I'm concerned that the way that you're describing this, this has gone on for some time, and I think, whereas I wouldn't be opposed to a course of steroids to see empirically if it work, I wouldn't be holding my breath for that. Now fortunately, there are several things that we can do to help with nausea. My favorite is cannabis. So cannabis has several different benefits in the setting of MS. And one of them is managing nausea. And so there's a FDA approved synthetic THC product that's been on the market for quite some time long before medical marijuana was made available called Marinol, which is FDA approved for patients with cancer who can't eat because of nausea because of chemo. And I've used that in the setting of MS with some patients before I've used it for Cachexia, that's a doctor word for you're not eating and you're wasting away. And so we give you a medicine like that Marinol or cannabis itself to help increase appetite and increase the ability to eat. I have some patients that really they're only able to eat if they use cannabis. There are other medicines like Zofran is a medicine Ondansetron that I use quite a bit to help with nausea. Although those are things that I don't like to keep people on long term. So there definitely are things that we can do to intervene. As my mentor used to like to say sometimes nature's too generous, and you can have MS. And then you can actually have a different reason that you have nausea, like diabetes or something, and so or an endocrine problem. And so it would be important that we don't ignore the rest of the human body while we're trying to treat that.
Sian Southward 51:30
Can medical CBD better MS symptoms? And does it affect the cognitive function for somebody living with MS or their quality of life?
Dr. Aaron Boster 51:40
Yes, CBD helps symptoms including anxiety and insomnia, and pain. And no, it does not affect cognition at all.
Sian Southward 51:50
Okay, how often would you recommend an MRI to review the number of lesions in the brain and spinal cord,
Dr. Aaron Boster 51:57
Once annually with the brain every other year with the C spine.
Sian Southward 52:01
Thank you. For those best not to suffer from fatigue, is there a minimum amount of sleep recommended to hopefully stay relapse free?
Dr. Aaron Boster 52:11
I don't know that there's a correlation with a number of hours of sleep but eight hours is what most red blooded humans need. And so I would budget for eight hours. Meaning I'm logging that I have that amount of time I'm able to sleep
Sian Southward 52:25
past living with MS is diagnosed with Fibro myalgia as well as well. How can they know the pain in the muscles and the spasms that happen aren't from MS. And will baclofen help a person with this kind of pain?
Dr. Aaron Boster 52:40
They can't know the difference. And yes, it'll help both.
Liz Waters 52:45
Can MS cause bursitis similar pain in the hip joint. I've been suffering a lot and the rheumatologist disregarded any type of arthritis.
Dr. Aaron Boster 52:54
But yes, indirectly. So let's discuss this. Let's pretend that your left leg is weak or wonky, and so you walk with a limp. And it forces you to use the right leg more than you normally would. You're putting undue stress on the good leg on the good hip in the good knee. And it can cause damage to the knee or the hip joint and it can cause swelling, which is called bursitis. So the MS causes the good leg to develop joint problems, because you're overloading it because of the limp because the the bad leg.
Liz Waters 53:28
Should I seek to commence DMT if I'm experiencing increased vertigo and dizziness, should I request an MRI?
Dr. Aaron Boster 53:34
Sian Southward 53:36
Are there any risks of starting earlier are that to be risk impacting their immune system negatively, and not helping the body's immune system protect versus other disease against other diseases.
Dr. Aaron Boster 53:49
If a doctor ever tells you that a drug doesn't have side effects leave the office because they're lying. All drugs have side effects. Some MS drugs modulate the immune system, they do not increase risk of infection, but they alter MS outcome. Some drugs. Oftentimes more effective drugs treat MS by suppressing the immune system. And so yes, they can increase the risk of infection. It's a risk benefit.
Sian Southward 54:19
They were diagnosed in May 22. And they're 33 years old. So they've had no prior symptoms and then had a serious relapse. They're about at about 85% now and on DMD Tecfidera. Should they consider an infusion and something stronger instead to try and limit their relapses? This they're an essential worker so they don't want their immune system completely wiped out but would consider it What's your thoughts?
Dr. Aaron Boster 54:48
If Tecfidera holds your disease at bay? That's great, but if it doesn't, you accrue irreversible brain damage. And if you don't want to have irreversible brain damage, obviously you don't, then you would want in my opinion to be on the most effective medicine possible. Tecfidera is not the most effective medicine possible. Tecfidera is a good medicine. It's not a great medicine. If I Aaron had the option to upgrade I would,
Sian Southward 55:16
what advice would you give to somebody who's often feels guilt about their MS. They're very fortunate to say that they're quite healthy, and actually would never know that they had MS. Sometimes they feel guilty wearing, we have like some out some flower lanyard, because people would look at this lady and say that they're just a healthy 28 year old. What's your thoughts on that statement, she said that MS is truly an invisible illness.
Dr. Aaron Boster 55:46
Because the vast majority of MS pathology is invisible to the outside observer. And so oftentimes invisible to even loved ones. And just because something is invisible, doesn't mean it's not real. It is real. And to add insult to injury, someone with MS can suffer and then be sort of dismissed by society for thinking they're faking it or that it's not real. And so the way that must make an individual feel is abominable. And so I apologize for being passionate. But this is unfortunately, something that people with MS have to deal with all the time. You don't know what somebody's dealing with. All you know, is the outside that you see. And so I think when you have a chronic condition, in my experience, people become nicer with a chronic condition, because they become sensitive to the fact that we're not aware of everything that's going on with people right now. We're not aware. And so it behooves us to be a little bit more kind. But I think at the same time that we work on being kinder to others, there's two other things that we need to do. You are in my opinion, madame obligated to wear that lanyard, you are obligated to wear that lanyard. Because you are the only person that can normalize that behavior. You are the only person that can cause a discussion. Why is she wearing that? I'm wearing it because if I stand up too long, I fall over and I can't feel my legs. I have MS. I didn't know. If you don't. If you hide your illness, you do not allow culture around you to grow and become smarter. I tell people who are embarrassed of their cane, Don't you dare be embarrassed of your cane. A cane is a sign of an intelligence. A person with a cane would like to not fall. And so when a little boy is walking with mom, and says, mommy. Why is she using a cane. That's an opportunity for the mother to say, well, she doesn't want to fall honey, she has a problem with her leg and the cane helps her and it normalizes it. So the one of the things that we need to do is we need to be brave. I'll remind you the definition of bravery, doing something despite being scared, right? And going out into public with your lanyard. When you look gorgeous, and there's no outward problems, it can be scary. And so I want you to be brave. Right? The second thing is, I want you to be very selfish. You need to be selfish, you live your life one time. And and you're not living your life so some stranger you don't know thinks nice polite things about you. You're living your life because you want to live a full life and you want to provide for your family and, and be loved and loved. And you don't have time, in my opinion to worry about what they say, you know that there's a great expression, your opinion of me is none of my concern. And I want you to have that opinion. You're not faking. You have that lanyard because you need it. Right? You have that lanyard because you deserve to have it because your society makes exceptions to help you. Right. And so I'm not going to be embarrassed because I have glasses. I love seeing like I'm a fan. And if I wear glasses, I can see, when I was a little boy, someone called me four eyes. Great. I can see really well with my four eyes. And I know that's a silly example. And I'm not trying to suggest that your situation is the same as my glasses. I just use it as an example where you need to be a little bit selfish. And so that's my opinion, and I really appreciate your willingness to bring it up here on this call. Thank you.
Overcoming MS 59:29
Thank you for listening to this episode of Living Well with MS. Please check out this episode's show notes at overcomingms.org/podcast you'll find useful links and bonus information there. Have questions or ideas to share. Email us at podcast@overcoming ms.org or you can reach out to Jeff 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.