Today I’m talking to Dr. Aaron Boster about the 10 red flags when you should talk to your neurologist or maybe even look for a new one.
Having appointments just once a year. Not having annual MRI. Not showin and explaining your MRI. Not ordering labs. Ignoring invisible symptoms. Ignoring medical adherence. Leaving out physical assessment. Staying on first line therapy when there you have an (highly) active disease course or breakthrough under your recent therapy. Ask you to pick your therapy instead of recommending the best matching one for you. Not learning about you.
Note: There might be financial restrictions in your local health care system that prevent the gold standard in care. But at least it is good to know how it should work.
This interview was originally recorded and broadcasted in June 2022 for the German MS-Perspektive podcast. There does exist a transcripted and translated German version, where I speak both parts.
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Table of Contents
[00:00] Nele: Hello, Dr. Aaron Boster thanks for being here, and a warm welcome to Columbus, Ohio.
[00:06] Dr. Aaron Boster: Thank you so much for having me. I’m delighted to connect.
[00:09] Nele: You are here today for the question of why I might should change my neurologist and to be honest, I just went to rehab and met some people where I thought, oh, it’s really time to change your neurologist. Shortly afterwards I found your video on YouTube about that topic. So, I’m glad you are coming to my podcast today. But maybe before we start, can you explain why you choose to become a neurologist and not something else?
Introduction
[00:41] Dr. Aaron Boster: Absolutely. So, I decided when I was 12, not to become a neurologist, but to become an MS doctor. I didn’t know, at the time that MS doctors were neurologists. What I knew was the men that were assigned to take care of my uncle were unreachable and I knew that my mother and grandmother were terrified, and I found them crying, holding each other in fear because they didn’t know what to do. And this predates the Internet, this predates the very impactful presence of the national MS society. And I told my mother that I would learn to do it better than those men. And since then, I’ve had a very directed course through all my training. I went, into high school saying I’m going to be an MS doc and its sort of becoming almost mission-driven to try to help impact the lives of people with MS. You know, to energize them and to empower them and hopefully to educate as well.
[01:38] Nele: Very good. So, you had really a personal relation to MS with your uncle who was suffering from MS in a time where there was not much you could do…
[01:52] Dr: Right. By then we had no MS therapies. So, as a young person, I got to see firsthand the natural history of multiple sclerosis, which is a very unpleasant way of saying if we don’t do anything, what happens to you?
Why do you think it’s important people don’t just stay with the first neurologist they met?
[02:18] Dr: So, you know, I have a YouTube channel and the reason I have a YouTube channel is I want to help educate people between visits. MS is a chronic condition, and it’s a rather complex chronic condition, and if I were to meet with you four times a year, that’s twice the national average in the United States. And yet it’s wholly inadequate to teach you how to beat the disease. If I use an example of one of my favorite games, chess, if I met with you for half an hour, every three months to teach you the game of chess, you will suck at chess. Like you would not be very good at chess because that’s not enough instruction to try to learn the game. MS is not a game and it’s actually much more complicated than chess.
[03:01] And so I was struggling to figure out how I could educate in-between visits and social media and in specific YouTube serves a purpose in that regard. And so, for the last, I don’t know, since 2015, the last many years I’ve been making at least a video a week. And, you know, my audience is really people impacted by MS. So, patients and partners and providers alike, and the video that you’re referencing, which I think I put out in January was arguably a little bit inflammatory and on purpose, it’s not a clickbait. I mean, I meant what I said, but I really wanted to call out an important issue. And that’s the issue of advocacy. So, you are an expert, you know, more about you than I ever will. You know, more about yourself than your spouse does. You know more about yourself than your doctor does.
[03:55] You’re literally an expert. And I think sometimes in the medical establishment, at least in the United States, we risk marginalizing the human being and telling them what we’re going to do and not really allowing their voice to be heard, and that’s not okay. And I was thinking, what are the things that I really want a doctor to do? And so, I came up with a list of 10 things that I think doctors should be doing, except let’s be honest. YouTube is such that if I made a list of 10 things, doctors should do, nobody would watch it. So, instead, I flipped it around and said, these are 10 things doctors should not do. So, if you would feel more comfortable reversing it, you could flip it around and say, these are, you know, a list of 10 positives. So, that’s the construct of the video.
[04:42] In the content, I literally just listed out 10 things that are red flags to me, where if I see one of those things in a physician, I’m a little uncomfortable. Now, is it my goal that everybody flees their neurologist? No, not at all. On the contrary, what I would empower somebody to do is to engage their neurologist because your relationship with your neurologist is intimate because you are gaming out the most personal aspects of your being with that human. And I think that relationship needs to be strong. And so that’s the background to why I made that video.
[05:21] Nele: Thank you for that background. To be honest, I have a really good neurologist, Prof. Tjalf Ziemssen. I don’t know if you know him, I think he’s quite popular. Yeah, and right now I’m doing a 400 miles drive, or I use a train to go to him because he’s excellent, and I prefer to stay with a good neurologist, instead of going to someone nearby.
[05:44] Dr. Aaron Boster: Absolutely.
Before we go into detail, please list once the ten red flags patients should be aware of when going to their neurologist
[05:53] Dr. Aaron Boster: Yeah, sure. So, these are in the order that I presented them. And the context is if your neurologist does one of these things, you should be concerned and consider whether you stay with them. All right. Quote, unquote, number one is being seen only once a year. It’s my opinion that that’s not frequent enough. We’ll come back to all of these.
[06:15] Nele: Agreed.
[06:15] Dr. Aaron Boster: Number two is not getting at least an annual MRI of your brain. So, if you’re not getting an annual MRI, I’m concerned about that. Number three is not showing you your scans. So, just telling you, oh, it’s okay. Or, oh, there’s a new spot is inadequate. Number four is not checking laboratories because every drug except Copaxone requires monitoring. And so, if they’re never ordering labs, then that’s a red flag to me. Number five is not screening you for common, invisible symptoms. Invisible symptoms that plague MS such as the up there’s thinking of memory, energy mood, you know, the down, there’s bowel, bladder, bedroom, other things like pain, like those are invisible, but they’re really important. And so, if your doctor’s not asking you about them, I’m bothered by that. Number six is not discussing medication adherence because taking medicine is hard and adults aren’t always good at it. And that’s not a bad thing. That’s just something that we must be discussing. So, if they’re not asking you about that, that bothers me. Number seven is not watching you walk. So, if they’re not going to do a full-blown exam, there’s an argument to be made, not to do a full-blown exam, but they at least need to do some physical assessment. And that bare minimum watching you walk informs them significantly. So, if they’re not, even if they’re only seeing you seated in a chair with no testing, that’s a red flag.
[07:46] Number eight is offering a first-line injection new here in 2022. And I will put some caveats around that. There are some patients that I have that are super responders to first-line therapies, and I’m not going to take them off them. I’m talking about your newly diagnosed, and they say, okay, we’re going to start you off in 2022 with the first line injection. Or if you have a breakthrough disease on a drug and the doctor’s offering the first-line injection as a switch, I’m not okay with that. Number nine is if the doctor says, well, go home and pick up your medicine. Here are five pamphlets let me know what you think. And the last one, number 10 is the doctor not taking any efforts to learn about you as a human being. So, it’s my contention that if those things are present, you should take pause and explore that relationship.
[08:39] Nele: Yeah, absolutely. And now we go into detail. Thank you, for that first overview.
No. 1: Why is it so important to see your neurologist every three month?
[08:47] Nele: And in which case it might still be okay to go there less often. I mean, I go there four times a year and I have quite a lot of checks.
[09:00] Dr. Aaron Boster: So, the goal in MS care is to not let MS make decisions for you, it’s for you to live your best life despite having MS. It’s to not have disease activity, radiographically or clinically, and to allow your brain to age naturally. And in order to figure out if that’s working, we’ve got to do a lot of things like to sort that out. One of the things we have to do is we have to ask you how you’re doing? Now human beings typically remember about two weeks. Like if you say like, how have you been doing, the person will report on the last two weeks, just in general. And so if you ask someone, hey, what’s been going on over the last year. They won’t remember and they may have had an attack seven months ago they didn’t tell you about it, and they got better, and they forgot.
I mean, just because, you know, and so it’s too infrequent. If you’re seeing somebody more frequently and it’s my preference that people are seeing quarterly, or at least every six months, at least that way, there’s less of a gap of time when you’re learning about how the patient’s doing. Similarly, the way that a neurologist helps someone with MS is by request. So, your neurologist doesn’t tackle you and jump on top of you and grab a syringe of medicine and jab it in your body. On the contrary, they say, would you please take this? And then you have to decide if you want to do it or not. And it’s my understanding in my experience that if you don’t understand why you’re not very likely to do it. But how am I supposed to know that you didn’t understand unless we talk? So, if I send you out thinking that you’re going to start a medicine, but you’re not picking up what I’m putting down, I can’t wait a year to find out you didn’t do it.
And so that’s one of the three things. The second thing after we ask you how you’re doing is to look at functional testing. So, in those 10 things, I listed one of them being walking, right? So, that’s a functional test. And we need to do some type of functional testing because you could develop a clumsiness with your non-dominant hand that you might not be aware of. But if we do a nine-hole peg test, which is a very sensitive test, we might pick up, hey, something’s not right with your hand, and you aren’t even aware of that. Thirdly, we need to look at the structure. We need to look at the structure of the brain and spinal cord, and we do that with neuroimaging. And that can be done once a year, but that’s not the only part of this. Right? The other two things are equally as important, if not more important. So, I’m remiss when someone only sees their neurologist annually because I think they’re missing the opportunity to do the most of what I just said.
Do older patients need to go less often?
[11:40] Nele: Yeah, but I guess for maybe some older patients, meaning living since many years with MS who are very stable, maybe it’s okay to go less often. But I know in the MS center in Dresden they do quarterly.
[11:56] Dr. Aaron Boster: Allow me to disagree with you. Allow me to disagree with the so-called older patient. It’s my experience that as an individual age, they risk collecting chronic symptoms, and so, whereas let’s say someone who is in their seventh decade of life, they are less likely to have an attack, but they’re more likely to have progression of disability. They have a higher risk of falling. They have a higher risk of deconditioning. They have a higher risk of pelvic floor atrophy contributing to bowel, bladder, and sexual dysfunction. They have a higher risk of social isolation and therefore depression and anxiety. And my point here is this lovely 70-year-old living at home, honey, you’re doing so well, may have a miserable quality of life. We can help them if we can talk to them. And so, I think that for different reasons, a so-called older patient can still have tremendous value with frequent visits.
[12:54] Nele: Okay. Totally agree. Totally fine.
No. 2: Why should MS-patients have an MRI once a year?
[12:54] Nele: I mean, I had a very good neuroradiologist on the podcast a while ago. Please explain it in your words.
[13:10] Dr. Aaron Boster: With pleasure. So, when you take a picture of the structure, it’s one of the best biomarkers that’s currently available to treat MS. And we could have its conversation about how you use the MRI to diagnose, but that’s outside the purview of this discussion. Instead, we’re talking about surveying the human being. So, remember how I said, there are three things we do. Well, you’re going to tell me if you’re experiencing something bad. I don’t need an MRI for that. So, if you say I can’t move my left leg, I don’t need an MRI. I have you telling me that. I need an MRI once a year to look for breakthrough disease activity, which is asymptomatic. So, you feel right as rain and your exam is gorgeous and you’re doing really well, but we get an MRI and oh my God, there are two new lesions on your brain. What that teaches us is even though you feel and look okay, you’re not doing okay. And there’s, it’s just a matter of time before you have a clinical breakthrough disease. So, this is a leading indicator, that something isn’t right. And it gives us an opportunity to intervene and up to our game shift, our drug makes a change before it manifests clinically. So, it’s a very, very important tool to pick up things before their clinical problem.
[14:26] Nele: So, it’s that relation, that just one out of 10 lesions in the brain, will show as a relapse, right?
[14:34] Dr. Aaron Boster: That’s exactly right. Meaning nine out of 10 times you’ll have brain damage except you and your family don’t know it yet. And we’re not going to know unless we get a picture.
[14:44] Nele: Yes. And brain atrophy is not good. I’m fine with my brain. I’m happy to have it in normal age, but I know many people have an older brain in relation to their age.
[14:50] Dr. Aaron Boster: Sure.
No. 3: What are the benefits of seeing your own MRI results?
[14:56] Dr. Aaron Boster: So, you have to try to live your life with MS. And it’s very hard for someone that didn’t go through 27 years of school to wrap their mind around this disease. And it’s also incumbent upon you to help your friends and family understand your condition. I can’t tell you how many spouses, like a traditional American male wants his wife to be okay, and he really doesn’t want to pay attention. Looking at your scan makes it real. When you see your MRI, and I point to brain damage, you can’t refute that, but emotionally. And so, it helps make it real. It helps bring us together, and even though you haven’t had bad things happen, thank goodness graciously. We can see that there’s stuff on the scan. And in my example, the spouse can see.
[15:54] And so I think it’s a very, very important thing. You know, if you break your arm, you get a cast people will offer to carry your bookbag. But if you can’t think clearly because you have lesions, they just think you’re lazy and you’re not. And you risk being told, oh honey, you’re just not trying very hard or some flippant comments such as that. And sometimes those comments come from loved ones. And sometimes those comments come from yourself because you start to buy into that. Looking at the MRI helps regulate that, say, no, no, no, no, no, it’s not my fault. I have a disease that impacts my brain and that’s why. And so, I think all those things are very valuable and they come to fruition when I show you your scan.
[16:41] Nele: Yes. And I think it’s very important that when you have problems with your cognitive resources, you can go to a neuropsychologist and get some help.
[16:52] Dr. Aaron Boster: Exactly.
[16:52] Nele: I mean, there is always help out there in one or the other way, you just need to know. Right.
[16:56] Dr. Aaron Boster: Amen.
No. 4: How often should my neurologist do lab checks to see if my disease-modifying therapy is causing any side effects?
[17:06] Dr. Aaron Boster: So, each therapy has rules about how often you check labs with the exception of Copaxone, Copaxone doesn’t require any labs. So, if you are on Copaxone with MS, I still want to check your vitamin D level because I want to make sure that your vitamin D level is above 50, but below a hundred, I’m talking about a vitamin D 25 OA level. And so even in that case, I’m going to check a lab once a year. If you are a gentleman on Copaxone, I’m going to check vitamin D and I’m also going to check an annual testosterone level. And if you tell me that you’re having some fatigue, I better check a B12. I better check a thyroid panel. My point is, that there are probably a lot of reasons that we may end up getting a lab here or there. And my point is not that your doctor better is ordering lots of labs. It’s that if your doctor never orders a lab, that’s a red flag. Now, if you’re on a drug besides Copaxone, it is important, and it’s part of the labeling of having monitoring. And so, if your doctor’s not doing that, now it’s a big issue because there may be some very serious safety concerns that we might be missing.
No. 5: Why does the neurologist need to check for invisible symptoms?
[18:17] Nele: I don’t know how it is in the US, but I know in Germany unfortunately for the non-MS specialists, it’s not as present so far, it’s getting better, but there are a lot of things to do.
[18:36] Dr. Aaron Boster: The number one cause of loss of work, at least in the United States, in the setting of MS is because of the cog fog and fatigue. So, it’s not because someone can’t walk because you could work in a position potentially using a wheelchair for mobility. But if you can’t read or think or process that’s going to take you out of the workforce and in the United States, half of the people impacted by MS have been forced to leave the workforce in only 10 years. Considering that the average age of onset is about 30 that means that 40-year-olds are very, very young people that have not paid off their college debt. They have not saved for their children. They have not saved for their retirement and are taken out of the workforce. Now, if the neurologists never asked about cognitive fatigue, brain fog, or just pathologic fatigue, then how’s the person going to be better because we’re not going to identify that it’s a problem.
And I don’t want to find out it’s a problem after you’ve been fired from your job. I want to find out ahead of time so we can prevent that from happening. Similarly, people impacted by MS are twice as likely compared to the general population to develop depression. And depression untreated drives MS faster. You actually neurologically get worse, faster, which is terrifying. And so, if you don’t ask the human being about their mood, how are you supposed to know if they’re doing okay? You have to ask them similarly; I oftentimes talk about the down. There’s, I jokingly say, you know, the down there’s bowel, bladder, and bedroom. And if you would like to make a human miserable interfere with their ability to have meaningful intercourse and make them unable to control their bowel and bladder, you will see an absolutely miserable human being.
And maybe they’re not having an attack and maybe they’re not having new spots, but they won’t leave the house and they don’t have many opportunities to see friends, and they’re certainly not engaged in intercourse and that’s abominable. And yet: “Honey, you look so good”. So, I think that as a neurologist, taking care of people impacted by MS we have to be very sensitized, that those are probably more common than a weak leg or more common than a clumsy hand and we better be asking. So, if your doctor never asks, that’s a red flag, that’s not okay. And I just want to make one more caveat. The way they ask can be very varied. Okay. So, you could give the patient in the waiting room, a survey they fill out, and then the doctor looks at it. He may not with words, ask you if you’re depressed, but it might be on the survey. That’s a way of capturing your voice for some of those invisible symptoms. One last invisible symptom that I want to call on the scripture, but that I didn’t mention yet is pain. Pain is very common in MS. And a lot of people impacted by MS are stoic and they’ll just deal with it, but it erodes the quality of their life. If the doctor doesn’t ask, if the person has pain, they may not volunteer because there are so many other things that we’re talking about, and yet we can improve the quality of your life by treating your pain. So, that’s why they need to be asking.
[21:45] Nele: Yes. Totally agree.
[21:46] Dr. Aaron Boster: Very important.
No. 6: What do you mean by med adherence and why does my neurologist need to know, if there are any kind of issues?
[21:46] Nele: I mean, I, I just found out when I had an interview with Professor Mathias Mäurer that there are people, where the med adherence is sometimes below 50% or something like that. I was really shocked.
[22:06] Dr. Aaron Boster: So, just to talk about epidemiologic statistics in the United States, we can track scripts filled, like how often a script is filled. And so that can give us information about adherence by looking at… and the data is really yucky. At two years, 40% of people prescribed to interferon beta products, take them correctly. It doesn’t mean they don’t take them at all. It just means that only 40% are doing it the way they were asked to do it. So, 60% are doing it wrong or not doing it. That’s bad. You know, if you don’t take a birth control pill, it won’t protect you against pregnancy. So, if you purchase a pack of birth control pills but don’t swallow them and you have sex, you can get pregnant because it doesn’t work. Similarly, if you’re prescribed Copaxone and it just fills up your refrigerator, it won’t slow down your MS.
And it’s not about whether you are a bad or a good patient. It’s about, it’s very hard to take medicines. I mean, I take medicines and I have to do things to make myself remember, otherwise I’ll forget. And I’m a physician I’m supposed to quite know about this. And so, because of all these reasons, it’s incumbent upon me as a partner to you to say, hey, how’s it going? Are you having any troubles? And if you’re having troubles, that’s not evidence of you’re a bad person. That’s evidence of, hey, you and I should game out how to make it better. You may find, for example, someone injecting after 10 years of injecting, they really struggle to do it. They had no problems and over time, it just happend, we call that injection fatigue. They’re not tired, they’re just sick and tired of injecting. And if that happens, there’s no shame in that game. We just have to talk about it and we have to come up with an alternative strategy. But imagine that I think you’re taking your drug, except you’re not taking your drug and you’re having disease activity. And I’m thinking that you’re breaking through and you’re not, it would be better if we just had an open conversation. I haven’t taken that in a couple of weeks. Oh, okay. Okay. So, that’s why it’s important. It just needs to be a conversation, you know?
[24:18] Nele: Absolutely. And there are like 20 drugs in the US. I think here it’s 14 in Germany, but there are enough drugs to find one that is fine for you.
[24:28] Dr. Aaron Boster: Exactly. Right. So, to your point, if somebody’s not on a drug at my clinic, they don’t want to be on a drug because I’ve never failed in like 17 years trying to match up the right person to something that they can tolerate. So, it’s my contention. If you’re willing to work with me, we can find something that you can put up with.
[24:46] Nele: Yes, absolutely.
No. 7: What kind of inspections of my body control and cognitive abilities should my neurologist do when I come in for a visit?
[24:55] Dr. Aaron Boster: So, my screening program, as it relates to functional testing is as follows in addition to the patient-reported outcome measures, the surveys that we have people do twice a year. We also do a full neurological examination and what we call MSFC testing or multiple sclerosis functional composite testing. So, in English soon to be translated into German.
[25:20] Nele: Yes.
[25:21] Dr. Aaron Boster: The MSFC testing involves number one, a cognitive test called the symbol digit modality test. It’s a 90 second matching test. And it’s exquisitely sensitive to cognitive impairment. A score of less than 40 is a concern and a drop of four points is a concern. And it only takes 90 seconds and it’s just a paper and pencil test. So, as long as the person has an okay vision and they can write like their hand works to write, then we can administer that test in the clinic.
And it’s an excellent arguably the best cognitive screening test for deficits in MS. And that’s one of the tests that we do. We also do an upper extremity test called the nine-hole peg test, which is done for time, and a 20% drop is clinically and statistically significant. So, if your left hand is, you know, let’s say 15% slower or, well, 25% slower than last time. I don’t know what’s wrong yet, but I know where now I got to go looking so, I can figure out, oh, you’ve lost sensation. Oh, you’re clumsy. Oh, you’re weak. God forbid, whatever the case may be. We do for patients that are able to ambulate. We do a timed 25-foot walk. Again, that takes about five to 15 seconds, doesn’t take very long. And a change of 20% is clinically and statistically significant. And so, if you’re walking consistently in five seconds, five seconds, five seconds. Now you’re walking in 8, 9, 10 seconds. Pause. We need to look into why. Lastly, we do a form of visual acuity testing oftentimes with a low contrast visual acuity it’s a very, very sensitive vision test. Sometimes if the lighting’s bad, we may use a high contrast visual acuity. And those are in addition to a standard neurological examination as a screening tool. And I think that’s something that we do at our center at least twice a year.
[27:17] Nele: Yeah, I do the same, and it’s nice to hear that there is the analog version because I do it all digitally in Dresden. Of course, the walking is analog but goes into the tablet for data analysis. And the time it takes is really okay.
[27:32] Dr. Aaron Boster: It’s very quick…
[27:33] Nele: I like to see my results, to be honest. I like to see, hey, I’m still doing good.
[27:38] Dr. Aaron Boster: To your point in the same way that it’s really helpful to show someone their scan. It’s also really helpful to go over your testing results. So, I jokingly call that the MS Olympics, and I’ll say, let’s go over your Olympics scores. I have worked in centers where we did computer versions of everything I said nowadays in my own clinic, I use an analog version, which works just as well.
[28:02] Nele: Of course, there’s no problem with it.
No. 8: For whom is basic therapy okay and why should most patients be treated with more effective medications?
[28:21] Dr. Aaron Boster: Now, this is arguably the most contentious point in my entire video. And in fact, I had one of my own patients call me concerned, asking if I thought I was going to get sued for making that comment. And it’s not my intention to say that a therapy that you’re taking is bad or good, because I don’t know how you are doing. And it’s also not my intention…. well, I guess it’s not my intention to say that we should throw all of them out and never say the word Copaxone or beta serum or what have you. That’s not what I mean. What I mean is there are evolutions to products. For example, I’m showing you on the screen, my iPhone 11, right? My first cell phone was not an iPhone 11. It was a flip phone, and it just had a keypad.
And so, I could call someone and that was what the phone could do. This phone has a computer, and I could translate German with it. I mean, I can almost do anything. I can buy airline tickets. I mean, this thing would fly. Right? What I’m pointing out is it’s an evolution in that technology. So, I don’t see anyone walking around with the old flip phones from 20 years ago. Well, interferon beta products and glatirameracetate in their day were cutting edge. They were truly a revolution going from no options to something fantastic. And since then, we have developed 20 plus other products. Many of them have been compared to those first-line therapies and in head-to-head studies, beat the pants off them. So, if you are on one of these drugs and responding then we sometimes will refer to you as a legacy patient. Someone that’s been on it for a long time and you may be a super responder. I have patients that are they’re super responders. They are doing beautifully on these drugs. Would I take them off? Never, ever, ever. My point here is if you’re newly diagnosed and they’re offering you a first-line shot, I’m not okay with that. That would be like going to an iPhone store and then trying to sell you the flip phone from 20 years ago and saying here, this is your first phone. And you’re saying, yeah, but what about that one with the cool computer and it’s got the screen? No, no, no, no, this phone’s good for you. You would leave the store. You would say, no, I want the new one.
So, similarly, if you’re on a drug and you have breakthrough disease activity, there may be a discussion with your clinician about escalating. If they’re taking you from whatever you’re on onto a first-line shot, that’s not escalating, and again, I have the same concerns. So, I have patients in my clinic that are on all of the injections and some of them are killing it. I mean, they’re doing amazingly well, but I vigorously check neuropsychic testing. I vigorously examine them. I send them for MRIs and we watch very, very carefully. And so that’s what I mean when I say if they’re offering you a first-line injection run for the Hills.
[29:41] Nele: Yes. And we were just discussing in a podcast with Professor Mathias Mäurer as a study from Sweden against Denmark…
[29:52] Dr. Aaron Boster: Awesome study, awesome study.
[29:55] Nele: They showed that Sweden is doing so much better with their hit-hard-and-early-strategy.
[30:00] Dr. Aaron Boster: Yeah. The national approach in Sweden is to start with a b-cell depleter, and the national approach amongst the Dane’s is to start with a pill and then escalate to a b-cell depleter. And so, what it did is it created two national registries where you could compare the results. And what they found was the earlier application of highly effective medicine had a much better outcome.
[30:05] Nele: Yes.
[30:05] Dr. Aaron Boster: Now with an individual human it’s, you know, yes or no it’s binary. And if you’re listening to this podcast and you take injection and doing amazing, I don’t want you to stop your injection, but if you’re having a breakthrough disease and you need to escalate, I don’t think you should stay in that class of medicine. I think you should escalate to one of the newer therapies.
[30:24] Nele: Absolutely. I’m one of the super responders, but if, if there would be breakthrough disease activity, of course, I would go to a higher level.
[30:33] Dr. Aaron Boster: And it’s really cool. In 2022 you have all those options. So, you may, hopefully never need to escalate, but knowing that there are options out there, I think is reassuring.
[30:43] Nele: Absolutely. I find it great.
No. 9: Why is it wrong to send patients back home with information about four or five treatments? So, they should decide on their own not having studied it at all.
[30:56] Dr. Aaron Boster: Exactly. So, I’ve never heard of a cardiologist who says, sir, you had a heart attack now go home and read about heart medicines and tell me which ones you want. Like that’s nonsense, except that’s exactly what happens in some clinics in the United States. Now, I don’t know about in Germany, but there are clinics in the United States where the doctor will give them a form on Copaxone, and a form on Tecfidera. You know, they’ll give them a couple of these kits and say, go home and read and tell me which one you want. And to me, that’s reprehensible because you don’t come and see me because I’m attractive or because I’m really good at tennis or because I’m clever with songwriting. You come and see me, presumably because I know some stuff about MS Medicines that’s the reason that you come to see a neurologist. So, you should expect some guidance. You know, I completed 27 years of school so that I can help guide you in which is the right medicine for you. Just giving you a bunch of packets, I think is disrespectful to the patient and to the family. And I don’t think that’s an appropriate way of doing medicine and I don’t think it’s done in any field I’ve ever heard of except unfortunate mine.
[31:10] Nele: Okay. Yes. But just to make it clear, maybe I have certain prevalence, that I just want to go once a month to my doctor or every six months for my medication so you might offer me options that are fine with me. And then I have to make the decision based on these roundabouts, right?
[31:37] Dr. Aaron Boster: That is shared decision-making. That’s beautiful. That’s where I listen and learn from you, and you listen and learn from me, and then together we fight through the medicines. And that’s where maybe I would say, okay, I’ve got it. We’ve talked, and I’ve narrowed it down to three options. I have homework. I want you to learn about them, get your questions, and come back. And we’ll talk about your questions and together we’ll pick the best one for you. What I’m talking about in my 10 red flags is not that it’s the doctor not talking, saying, go learn and come back and give me your final answer. That’s what’s not okay. No. What you’re describing as shared decision-making is beautiful that’s the way it should be.
[31:50] Nele: Yep, absolutely. And it’s shared decision-making now we are coming to that point.
No. 10: What are the benefits of working together as a patient-physician team to achieve the best possible outcome for my life with MS?
[31:01] Dr. Aaron Boster: Exactly. So, the relationship that you have with your MS Neurologist is intimate. It’s an intimate relationship. Now it’s not like sexually intimate, but it’s an intimate relationship nonetheless. I mean, you tell your neurologist things, you don’t tell your spouse or your priest sometimes. And really, you’re gaining out how to live your very best life. I don’t know how I can help you do that if I don’t know enough about you. So, it’s not that I need to like attend all your birthday parties and go on vacation with you, but I want to know what do you like to do outside of coming to visit me? You know, for example, I give a homework assignment to every new consultative visit it’s to write down three to five long-term life goals. And then the next time we meet I have you tell me them, and I write them in the computer. And the reason is I can tell you how to beat MS. I can’t tell you why you have to tell me why. And I think you should want me to know that. If your life’s goal is to climb Monte Pichu, I need to know that because we have work to do, if your life’s goal is to walk your son down the aisle on his wedding night, I need to know how old is your son and when is that going to happen? And I need to help you prepare for that. If I don’t ever ask you about your life, I can’t provide adequate benefit to you. And so, I’m not saying, you know, that you need to be interrogated about your boyfriends and girlfriends, but I do think the neurologist should at least engage in a meaningful conversation about what you’re into, what you like, what you don’t like. I mean, if you’re a piano player, I need to know that because I want to know if there’s any impact in your piano playing. If I want to assess, for example, dexterity on telemedicine and you’re a pianist, I just have you play the piano and listen, that’s a really good way to do that. But if I don’t know that you’re a pianist, I don’t know that’s available.
[31:13] Nele: Yeah, absolutely, and we just had a really nice example in Germany where Frank, somebody who was in an MS patient interview on my podcast a while ago, his grandson turned 14 and he wanted to be walked by his grandpa in the church. And Frank really trained hard, having an EDSS level 8.0 and normally not walking since a long time. And at the end, he reached that goal, because of the emotional power behind the wish of his grandson.
[31:51] Dr. Aaron Boster: That’s awesome. And if he didn’t make that clear to his neurologist, his neurologist wouldn’t be able to help him do that. Yeah, so, that’s exactly right. And that’s a beautiful story. Thank you for sharing that with me.
[32:02] Nele: Yes, it is.
What would you suggest if patients just realized there is one or more red flags with their current neurologist?
[32:13] Dr. Aaron Boster: I think they should remember that it’s their body. It’s their brain, it’s their money, and they only get to live life once. And that’s a long-winded way of saying, I want you to be more selfish. I want you to be a self-advocate and say, excuse me, doctor. I would like to see my MRIs, please. Please show me my MRIs. Say, excuse me, doctor I understand I haven’t had an attack, but I can’t control my bladder. I wet my pants. Will you please help me? It’s my hope that this sensitizes you to be aware of what I at least think is an expectation of a good doctor. Now, if they’re doing one of these, does it mean they’re horrible and you should fire them? Probably not, but it’s worth a conversation. If your doctor never gets labs, you might say, hey, do you need any labs? They may say, oh my gosh, you’re right. I forgot we do. See what I mean? So, it’s my hope that somebody listening to this thinks critically about their life with MS and how they can optimize it. And if their partner, their intimate partner, or their doctor is not doing some of these things. Maybe that’s a good discussion to have.
[33:25] Nele: Yeah, absolutely. I mean, there are really some, let’s say lighthouses in Germany or in the German-speaking countries who do very well, and I always have them on the show and to hopefully spread out the words that there is a really good treatment, really good taking care of doctors and please other neurologist in the field try to be as good. And yeah, please talk to your doctors if they are not, normally you become a doctor because you want to help people and not to become rich and famous.
[33:56] Dr. Aaron Boster: Correct. If the goal of going into medicine was to become rich and famous, then that person made a terrible, terrible error. Now we are servants. We help people live better lives. We assist others. That’s what we do.
What is your mission and motivation for providing so much information for people living with MS?
[34:10] Nele: I mean, I see you publishing all the time new videos, and I’m like, whoa. You don’t have a life, do you?
[34:31] Dr. Aaron Boster: I have a goal of educating, empowering, and energizing people impacted by MS. I really want to create some MS content that is easily digestible, easily understandable, and free to access at any time. And if nothing else, hopefully, I can help educate and raise your understanding of the disease so that you can have a more successful engagement with your clinician. You know, in my religion, there’s a term called a mitzvah when you do a good deed, it’s a mitzvah. So, if you walk an old lady across the street and say, oh, that’s a mitzvah, you’re a mensch, right? And then in… there’s an option. There’s something called a double mitzvah where you do a good deed and someone can’t pay you back. And I sort of, if I may view my YouTube channel as a double mitzvah, because I may help someone in Dreden in Germany that I never get to meet. And that is a gift to me that is almost indescribable. It’s very special. And so, I’m just really delighted. And as long as people find the content helpful, I’ll keep making videos every Monday. And hopefully, people keep learning and enjoying it.
[35:36] Nele: Very good, and I will translate this one so people in the Germany speaking countries who are not that familiar with English, can listen to it.
[35:47] Dr. Aaron Boster: Thank you very much. Thank you. That’s so kind of you.
[35:50] Nele: Thank you.
Which development in MS research or treatment would you like to see in the next 5 years?
[35:57] Dr. Aaron Boster: You said five years.
[35:58] Nele: Yes.
[35:59] Dr. Aaron Boster: Okay. So, can I do two?
[36:02] Nele: Of course, you can.
[36:03] Dr. Aaron Boster: I’ll do one therapeutic and one diagnostic. So, protein tyrosine, kinase inhibitors abbreviated BTK inhibitors are a class of medicine that are being developed by multiple pharma companies right now, and the medicine is very exciting because it brings to the table some things that we have not yet been able to do. So, for example, BTK inhibitors, block b-cells signaling without murder. So, there are really good drugs out there like rituximab and ocrelizumab, and ofatumumab, which are very effective, but they have an increased risk of infection because they kill B cells. This BTK inhibitor blocks them without murder, which decreases the risk of infection. Also, there are two halves to the immune system, the adaptive that’s, the B and T cells, and then there’s the innate immune system. And to date, not a single one of our therapies can directly impact the innate immune system.
BTK inhibitors can actually turn off a resident in the brain called microglia so it’s really, really exciting. So, therapeutically, I’m tickled about this new line of drugs that we’re developing. And it’s my hope in specific that they work in progression. I think there are some reasons why that might be really great for progressive MS so fingers crossed there. Now, diagnostically, I am really excited about serum neurofilament, and light chain. So, this is a blood test, which is not yet commercially available in the United States, but it’s really close to prime time. And we’re still working out some kinks, but essentially it gives us a biomarker that’s not an MRI, which could tell us some really exciting things like, are you responding to your therapy? Are you getting ready to have an attack? Is your disease progressing? And we can use it at least in research.
It looks like you can use it as treatment response. So, higher is bad, lower is good. And what we’ve seen, for example, in some studies is if someone’s on therapy and they’re not really doing well, they have a certain neurofilament light chain, and when you put them on an escalated drug, it drops, the neurofilament drops. And so, this could be a very exciting biomarker instead of asking you to stick your head on a machine, I may be getting blood more frequently. And so that could potentially be a really great game changer. So, those are two things that I’m super excited about, and I think they’re both going to hit in well under five years.
[38:27] Nele: Great. Yes, Neurofilament light chains are always hard to pronounce. I had Dr. Katja Akgün from the MS-Center in Dresden in an interview here. She was explaining the neurofilament light chains. So far the use them every now and then, but maybe you have to pay for it, maybe not. Hopefully, it will be covered by health insurance rather soon.
[38:49] Dr. Aaron Boster: Yeah. Right now, in the United States, outside of research, you can’t get one, like you can’t order one through your insurance product. But it’s my hope that very soon that will change.
Where can people keep find you and your content?
[39:03] Dr. Well, that’s nice of you. So, I have a website which is BosterMS.com. So, B as in boy, OST, E R MS com. I have a YouTube channel that I’ve referenced and that’s my name, Aaron Boster MD. I also have a presence on Twitter, Facebook, and LinkedIn. And again, that’s at Aaron Boster MD. Yeah. So, you know, if you’re on the internet, stop by and say, hello, hi, I would love to meet you if you’re listening to me right now.
[39:32] Nele: Great. Thank you very much for spending your time. Thank you very much for everything you do for your patients and keep on going.
[39:39] Dr. Aaron Boster: Thank you for what you’re contributing. I mean I’m honored that you’re going to translate what we said in German and a bunch of people can learn from it. So, thank you very much.
[39:48] Nele: Thanks, bye.
[39:49] Dr. Aaron Boster: Have a great day. Bye-bye.
Many thanks to Dr. Aaron Boster for providing a guideline, what are some main cornerstones in the relationship of neurologist and MS-patient. And please speak up, if you feel something is wrong, and just realized that there are to less checks or insights provided.
You always have to bare in mind, that its your life and you deserve to live it in the best possible way and health! So stay informed and make conscious choices.
Maybe you want to look up the episode on „10 reasons to see a neurologist who specializes in MS“.
See you soon and try to make the best out of your life,
Nele
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