How Listening Skills Can Transform Patient Care and Build Trust

[I wouldn’t even wish you’d understand. I just wish that God had a better plan. I’m so confused. I need a redo. A redo. There’s something that’s inside of me that’s begging and begging and pleading. I just want to feel free. I just want to feel lovely. I’m surrounded by love that’s in pain. Can I wipe your tears away? Please don’t hurt me. I hate that it’s for me. Oh, I hate that it’s for me. Hi, welcome to the MS Michigan Man 64 podcast. My name is Brian. I am the MS Michigan man 64. I’ve had MS for 28 years. I got diagnosed in 1997.

I talk a lot about my journey and I usually talk with other chronic disease warriors all over the world and and just have a conversation about um their journey. Today’s a little bit different. Today I invited on my neurologist Dr. Brendan Bower from Mercy Health in Ohio. Um I’ve been with Dr. Bower for about 10 11 years now. I transitioned with from to him uh when my uh first doctor uh moved out of state. He went down to South Carolina and um Brendon Bower is an awesome guy. I I the guy it was such an easy transition I was worried about. Um I’ve been trying to get him to do this podcast with me for a few months.

He had some health issues so we ran into some roadblocks but we’re finally here today. Please welcome to the podcast Dr. Brendan Bower. How you doing? Great. Hey, thanks Brian and I appreciate your patience and uh with with my schedule. You’ve been you’ve been awesome with that. Yeah. So, and I’ve been um I’ve been at Mercy here now less than six months, but you know, practicing as a neurologist for 25, but but always interested in neurology. Uh my father was a neurologist. He’s 91 still living and and always doing something with his brain. So, um I I think the passion was there from a young age for me. Yeah, absolutely.

You know, it’s a special person just to be a doctor. I mean, number one, you got to be intelligent and and I think a lot of you have to have that passion. I unfortunately I don’t think a there are some doctors that don’t have that passion. I think they’re in it just for the money. But I when I first met you, I know that, you know, when I first meet a doctor, I I always start out with small talk, you know, just asking questions cuz I want to be able to talk to a doctor, you know, and I think cuz I think that is just really really important.

And then I know when I first met you, you know, I I think one of my first questions to you was, you know, hey, where’d you go to med school? you know, and you told me and then we found out that we actually knew a lot of people in our circle. We’re about the same age and you know, and that just made it so much more comfortable for me um just as a new patient with you, you know, 15 or about 11 years ago, doc. No, that’s great. Yeah, you went to Padawa and I God, I have so many buddies who went to to that school. I went to John Carroll small Jesuit school, but it’s just amazing how that that loop goes around, too.

It’s it’s uh you know it makes you feel good and you know one of the things that I would have to say that I didn’t learn in any textbook and certainly not in residency and definitely from my father was the ability to listen and um what I mean by that is like you know as doctors we love to talk over you. We like to you know cut you off and go to something else. And um he was really passionate about just not saying anything and listening as long as he could possibly could before he says anything. And and I really think you really get to know a person when you allow them to talk. Uh and you know they’re be caught off.

You know they’re going to be heard and and and I always think that that was a real that was probably the best life skill I got from anyone is from him. Yeah. Absolutely, man. Yeah. Like I said and and and I have a really awesome relationship with you. Um you know, we talk medicine, we talk about me, we talk about outside, you know, we even talk about your health problems. I know you run you ran through you went through a cancer thing about a year ago and you know I mean it’s a different relationship and I wish everybody had that relationship with their neural you know it’s just it’s a good thing to have buddy. No.

And I, you know, and I tell you that what uh, you know, I had melanoma and I had to go chemo for a year and um, you know, you’re in that infusion chair. You know, you’re you’re at the will of someone else and everything’s behind. And so, you know, becoming a patient is so different because doesn’t matter if you’re a doctor or not. No one really sees you. They just see you. They just see a patient and then um, but, you know, it’s good. There’s no special treatment. I had to wait just like everyone else. And, um, the frustration of it, the side effects. It’s immune-based therapy.

So, you know, it kind of really made me think, I’m getting this every month and how am I tolerating it? And then, you know, what kind of things would I expect my patients to go on and would I, you know, now being through that, you know, um I’m real I’m real cautious in what I want to give someone sometimes knowing that, you know, side effects may seem good on black and white on paper, but man, until you’ve lived through them or had had a bad experience, I get it. So, yeah. Absolutely, man. And that’s that’s what I appreciate appreciate about you, doc.

You know, you you you’re you can talk on our on our level, on a patient’s level, you know, even though you’re a doctor and you know, you got all this knowledge, you I can talk to you and I don’t have to sit there and tell you, “Hey, doc, dumb it down for me, man. I’m not that smart.” You know, I mean, you you talk like a a normal person, and I just really appreciate that. Let me let me ask you this, Doc. Let’s talk Let’s talk a little bit about my MS. I’ve been doing this since 1997. I started out with Joe Hannah. He he diagnosed me and then when he moved down to South Carolina, I transitioned over to you. He handed me off to you.

Um and and what you know I I had it for about 16 years and I think I at that time I was on Gilenya and um um you know and you you you took over my care. I just kind of talk about my MS and you know when you first met me and and where my MS has gone since you’ve been with me. No, that’s a great question. And so, you know, and it’s so different with each person just because everyone is so different. So, I always like to take that first meeting to really gauge, you know, um, you know, everyone, you know, people with MS, they all have similar symptoms, but no one’s the same.

So, I always like to see, you know, how how important is the the disease to them. And, and I like to tell them that, you know, my my biggest concern is um, you know, we can take a day off. you can take a day off, but man, MS is out in the parking lot doing push-ups. That’s the thing that always makes me nervous. So, I I’m kind of more of a proponent of um definitely the better medicines, you know.

So, if people are on whatever therapy you’re on, and you may be on a therapy that may be old in relative terms, but I will say as long as you’re stable, meaning like you’re not getting disability progression, you’re not having flare-ups, you’re not having relapses. Um, and sometimes, you know, if all of those things are met, I say, “Hey, great. Whatever you’re on, we’re going to keep it.” But if people are still struggling and and I always want to look at, you know, if are the, you know, if they’re still having progressive symptoms or still feeling like each year gets worse.

Um disability is is really tricky with MS because I always say like aging a person ages in 10-year increments meaning like I can see my my parents from like 80 to 90 slowly over 10 years you know that you know they started using assisted devices but it was slow it wasn’t like overnight MS ages you in like twoyear groups so I mean like in two years you can be walking with you know nothing and two years later you can have a cane two years later you could have a walker. So MS is kind of a more rapid uh progression when it comes to disability. So sometimes it doesn’t hit you over the head, but people around you will notice if you don’t notice.

Um and that therefore I always really like to make sure that all those metrics disability flare-ups, relapses, and and and also side effects. Are you tolerating the med? Okay. Um, so I always like to see, you know, where someone is and and what is their how to gauge their risk and also like are they happy with where they are? Do they feel like they’re still getting active symptoms, you know, with you definitely, you know, because you know, you were a guy who, you know, was playing on such a high level. Football, you’re very active and then wham, this thing hits you, you know, right after right after college. You know, you and I graduated 93.

You had to be pretty close. I was 92. Yeah. Yeah. You right. you’re one year ahead of me. So, you know, I get it. So, by 97, I mean, you’re getting hit over the head when you’re a young man with this like, you know, really heavy diagnosis. So, yeah. U and Joe was great. You know, Dr. Hannah was so good at listening. He was so good at managing patients symptoms. Um I thought and and so what I always wanted to make sure of is that, you know, did I carry that torch? Did I listen to your symptoms? Did I kind of guide you through the proper choices if we thought we needed a new disease modifying therapy?

And I’m always willing to try something else knowing that, you know, hey, if if we still feel like you’re on a great drug, but you’re still kind of getting more symptoms, do we switch it up and try something else? You know, I I’ve always been a proponent of that and and you’ve done great with that, you know. And and the thing that I appreciated about Dr. Hannah and and and you is that you always left the choice up to me. Like if I you cuz you’re like you know babe Brian you know your body man if if this DMT if you’re not feeling right on this DMT we can switch you up. You never gave me a hard time.

I hear from people in the community that I’ve recorded with like they’ll have a neurologist and they’ll be like okay we’re going to put you on Ocrevus and they’re not doing well on Ocrevus and they’re telling them and the doctor said well you know you just got to give it a chance and they make they they they keep them on it for another 6 months or a year. it just seems like they don’t listen to their patient and and and that’s what I appreciate about you because I know I did that when I was on Gilenya with you and and you know I I’m like you know hey I I had a bad episode and then you put me on Mavenclad and that’s that’s another drug that you know a lot of people don’t really know a whole lot about and I didn’t know anything about it when you brought it to me you’re like you know hey there’s this drug Mavenclad I’m I’m thinking about putting you on and I’m like I never even heard of it you said it came out during and co talk a little bit about Mavenclad and and that treatment that you put me on.

Abs. Absolutely. And one thing I always like to bring up too and I don’t know what it is about MS and and I’ll say that before I get into Mavenclad is that um it’s only MS patients where you could go to your neurologist like flare up after flare up and no one wants to change your medicine, you know. And I always say, listen, if it’s not working, it’s not working. It’s going to beat you over the head. And I don’t know what it is. If we as neurologists treated strokes like we treat MS, we would be we’d be out of practice.

We’d be sued every day because if you came in with a stroke and I kept saying, “Oh, just take your aspirin, Brian, and and and go home and and have a good life.” And then another stroke comes. And I said, “Well, Brian, make sure you’re taking your aspirin.” That’s how we’re really treating a lot of that’s how a lot of neurologists treat MS. They’re not comfortable making changes even though the patient’s uh more comfortable. And it’s funny, I always thought that we were more worried about risk or excuse me, uh, you know, that patients were more worried about risk than doctors.

And what I realized in in talking with other neurologists and even reading journal articles that have come out is that patients are way less scared about risk as long as their doctor explains things to them, like they’re they’re more uh, you know, they’re more uh, willing to take risk than we are as neurologists because they’re living in that body just like you said. Yeah. Um and in Mavenclad, what I kind of liked about it is it was during COVID, I mean, everything shut down. If you were on Ocrevus, you couldn’t get it or they wanted to delay when you get it or you couldn’t come into the infusion center.

And Mavenclad was kind of this, you know, kind of forgotten child that was a really good drug that it really reboots the stem cells. So, what it does is it just goes after the bad apples. So if you have, you know, active B and T cells and let’s say you have like 10,000 active cells in the body in your immune system, say about 2,000 of those are the bad apples, Mavenclad’s just going after the 2,000 the bad apples and and really just targeting them. And it makes them slowly die off over the course of about 3 months. And then what happens in that time is your bone marrow reboots uh cells, reboots healthy cells that don’t have the MS signal.

And then what we’re able to do is kind of monitor your blood work every three to six months to see does that signal ever come back? Do those cells start repopulating? We can tell that with a blood test because sometimes we need to redose it. Sometimes we don’t have to redose at all which is nice. But Mavenclad was was such a nice medicine because well tolerated you can give it from give it at home during COVID. You know, you didn’t have to worry about side effects, phone calls, pre-treatment with all this other stuff. So you didn’t get this crazy immune reaction. was really clean as far as side effects.

And do you agree that, you know, you tolerated it pretty well? I I’ll tell you, doc, I I’ve I’ve done about six different DMTs. Um, Avonex, Copaxone, Gilenya, um, and uh um, what’s the other one that I that you had me on? The gel, the gel one. Oh, Actar gel. Yeah, Actar. I was on Actar. Um, you know, I I’ve had side effects from all of them. Copaxone. I didn’t have anything.

Um I I I had maybe a little bit of flushing from it and when I first took took my first my first week, but after that I it it it was it was an intimidating drug. you get the box, you know, in your house and it has all these stickers on it and you know, don’t touch it and it’s it’s chemo and you know, you got to make sure you have you wash your hands and don’t touch any, you know, it was intimid intimidating to look at that box when I did it and I’m like, I’m putting this in my mouth and I’m going to swallow it and but I as far as as far as the reactions to it, yeah, I I and I actually think my legs have gotten stronger, you know.

I I’ve already finished my two years and I think I I’ve gotten stronger. You know, I I was just uh well, I think the pain patch is helping me too because it’s taken my head my my mind off of the pain, but you know, I it I’m very happy with uh with uh Mavenclad. Yeah. No, and you know, and I I was very lucky like when I started so I started med school in 93, a year after you graduated, and that was the first year that we came out that they came out with a disease modifying therapy.

So during my med school, um they they basically came out with the very first therapy, you know, that and and it was nice because uh we finally had something to slow this disease down. And um which what was interesting is these were all basically subcutaneous medicines. Um and what they did is like, you know, it was so hard to get and there were so many people who wanted it, they actually put you on a lottery. So I I look back at in 93 you had to be on the lottery to get this medicine that was not really well tolerated that was every other day. It wasn’t kind of fun. Um and the nice thing and and and that was betauron.

And then uh really since that time they’ve really you know came out with more injectables and then late 90s we got copaxone. So kind of all through my residency and training I’ve been through like the all the MS meds and and now it’s so nice because man it’s like BaskinRobins. We’re almost at 31 flavor. So, I always say that, you know, I’m never I’m never stuck with one med. And I always say, you guys live in that body. I get that. You know, I get that as a patient, too, because I I feel like when I’m having side effects, too, the first thing I would want to do is switch or know that I’m being listened to if I can’t tolerate something.

Um, and that’s important. And and the nice thing is is that because of those choices we have today, um I will say, listen, if you don’t have a neurologist that’s willing to say, you know, hey, I’m on this med, it’s not working, I’m having relapses, I’m having flare-ups, or I’m just having, you know, disability progression.

Um and you know that pura that progression you know irrespective of relapse activity that they talk about I mean that’s a real thing where people say I haven’t had a flare up in 20 years but if you look at the last 10 years they’ve gone from like you know a cane to walker you know that you’ve seen that progression although the MRI hasn’t shown a change you’re definitely seeing signs of of disability progression that those are all reasons to look at a switch you know so and also tolerability. You know, tolerability is so huge. Like, if people say, “Man, this is so awful.

I know it’s helping me.” There’s so many other good meds I I want to switch if tolerability is an issue, too. That’s exactly That’s exactly what I did when when uh Joe Hannah put me on an Avonex. I was only on that drug for a month. And I went to Joe and I’m like, “I can’t do this, doc.” I go, “I’m sick every every weekend for three days.” I go, “I have no life, you know, you got to put me on something else.” And he switched me to capacin right away.

So, I mean, right real real early in my diagnosis, I I I advocated for myself and I I tell people, man, if that drug does not make you feel good, tell your neuro cuz there’s so many other choices out there. Like you said, you know, it’s it’s BaskinRobins now. And that brings me to the next question that, you know, I know everybody asked this. When I first got diagnosed in 97, there were only three DMTs. And I was told back then, not by Dr. Hannah, but by one of one of his nurses, you know, hey, there’s three there’s there’s actually treatments for MS now. There’s probably going to be a cure in 10 years.

And, you know, it’s 28 years later, there’s still no cure. How close do you think in your in your opinion are are they, the researchers, to coming up with a way to stop this thing for good? Yeah. And that brings up a good point. You know, I think we’re finally, you know, getting into what we call, you know, higher efficacy meds. Like if we if we were to break down all the MS meds into brackets of risk and tolerability, but also how well we think they work on the bad part of the immune system that’s fighting you. Um, injectables we kind of consider on the, you know, hey, they they do a good job.

Copaxone is by far the best of the injectables, you know, as far as the first line, what we call platform therapy. And then if you look at all the orals, they’re pretty much in that mid-range. They all do a really good job. And then higher efficacy whales considered like Tysabri, Ocrevus, Briumvi, Mavenclad is the only oral therapy that actually um is considered a high efficacy therapy.

And if you look at the numbers like even boundary and ochre, if you look at these numbers, minced as well too is that you’re you’re really in the what we call no evidence of disease activity. you know, that’s the gold standard in medicine that we’re all aiming for. Um, we didn’t really see a lot of that with the platform therapies.

We saw more of it, maybe 20%, 25, 30% with the oral therapies and with these, you know, infusible, what we call the high efficacy, including mapping, but you’re at the 50 to 55% as far as no evidence of disease activity, which means that’s great for half of the people, but what about the other half? at where, you know, that’s where I I think the evolution is is definitely getting better. You know, we have a couple newer uh therapies that are coming out that that more target really right at the um right at the central nervous system, right at the plaques and right at where the cells are are active in the plaques.

Um and those have kind of, you know, went through a couple failures, but the good thing is is that there’s always a push for better medicines. We’re not there yet, but I I definitely think, man, when I from where I started to now, um, and I can tell you the proof’s in the pudding. And what I mean by that is when I first was out of residency and practicing as neurologist, I can’t tell you how many people I put in the hospital, gave him steroids, got him physical therapy, put them into rehab, and then sent them home. That was really common, you know, and I’m talking about late 90s, early 2000s, that was really common.

And and then over this last 25 years, it’s very rare that I admit someone for MS. It’s it’s exceedingly rare because, you know, we have Athar, we have we have home uh DMT, we have home rescue therapies which work well, but we’re not seeing as much of the relapse part of it. You know, we may be seeing disability, but if I look in the last 25 years, I I would totally agree that probably 55% have really no evidence of disease activity. And if we catch people early now, like but I mean if you get diagnosed today, I think you’d be hardressed to notice that someone in 10 years or 15 years actually still have this disease.

They they look like any other patient in my office. You can’t tell what disease they have. They’re not using a walker using a cane. And and I think that’s really important. Does that make sense? It Yeah, that does make sense. But you said catching it early. And I hear from a lot of people that I I I’ve interviewed and I talked to in the community that, you know, sometimes it takes three, five, seven, 10 years to get that diagnosis.

You got doctors that are just like looking at them and telling them that it’s a mental health issue. you know, it it there’s nothing wrong with you and and and they’re running tests for for lupus or for this and they’re coming back negative and they’re brushing off the MS part. They’re not It seems like and my first question is did they do an MRI? No, nobody’s ordering an M MRI. Why Why aren’t they ordering an MRI? I think that’s the frustration with with patients is that they’re going to the neurologist, but they they’re just they’re not getting tested for the right thing.

So it it it kind of it it makes their diagnosis delayed and and and and that’s hurting them in the long run because they’re going for years without a diagnosis sometimes. And you lived through what I call the worst part of neurology. We had a period, I don’t know if you remember this, but like in the late 90s, early 2000s, we had this classification um for MS that was really barbaric.

It was kind of like you either had MS def clinically definite MS or you could have had probable MS you know and what was that you know and now we look back and it’s like it was all MS but it was just you sometimes when we’d catch it early no one wanted to you know say hey this is probably what it is and not everyone gets these 10 le you know so think of it even the M even the McDonald criteria which we used to diagnose you know it wants 10 or more lesions in the right locations that was the the older criteria and that means like you know when most people say 10 my god you know do I have 10 in my head before I get diagnosed that seems like a lot and now we just look at you know depending on the location do we have activity that shows you had a new lesion and older activity that shows that you know that it’s not new and how we tell that is contrast so if you have new activity it’s enhancing you know and I always say the reason we do the MRI with contrast is the contrast tells me what is your MS doing right now today on the day of exam how much activity is there based on because think of wherever that diet goes is wherever you have blood brain barrier breakdown so it lets us know how active is the MS now and everything that doesn’t enhance but still shows a lesion is what we call what what your MS has been what’s been going on for the last 5 10 years so the you know the stuff that doesn’t enhance is where your MS has been um and the nice kind of thing is is that uh the uh the other factor we look at is what we call T1 one holes.

And what that means is that the demyelination’s gone on so long. It hasn’t been stopped. No one’s paid attention to it that it actually creates a hole. And that’s disability. You can’t get that back. So, the nicest thing is that we’re, you know, we’re finally getting to a point where we’re diagnosing it earlier. Um, but I’m still as frustrated as you because I can’t tell you how many I get. We’ve been to even another neurologist and they’ve had every test, EMGs, but nothing, not an MRI.

And and when I look at their exam and they have jumpy reflexes, I’m like, the last test I would do was any of the tests they’ve had ordered and and it’s almost like they got brushed off. And I’m like, no MRI, but all of their reflexes are brisk. Everything’s screaming MS. Um, and that’s where I really think, you know, MS is such a history. Meaning, you you listen to a story and I don’t even have to lay hands on someone.

I can just tell by their story that I’ve had this progression of symptoms and that fatigue and you know so MS has a story and and everyone’s story is different but there’s enough similarities where I don’t even have to lay hands on someone and to know that hey that’s an MS story you know let’s go looking for it now is that kind of make sense yeah absolutely absolutely so my next question for you is I hear from a lot of people that you know they they get a dual diagnosis like they got lupus and MS or they got um fibromyalgia and um or even NMO.

Can you like uh talk about the differences in those diagnos diagnosises um just so that people can understand the differences of them because I know there’s a lot of similarities but there are especially with the NMO one um I know that’s that’s a in the family of multiple sclerosis doc. Yeah.

So, so the great question and and I always think you know how do you take something complex like that and make it simple and the way I like to think about it is where is the autoimmune action taking place and I’m a firm believer fibromyalgia you can’t convince me otherwise is an autoimmune reaction of the nerve and muscle the soft tissue so think of like fibromyalgia as peripheral not central like MS it’s the peripheral nervous system it’s the nerve ending it’s it’s the muscles it’s the joints it’s everywhere where these little nerve fibers go outside of the central nervous system that hurt and ache.

And we really think, you know, um that these are probably just autoimmune reactions that occur in the peripheral nervous system, you know, at the nerve and muscle level. And then if we look at um you know anyone who has MS or you know has lupus it’s interesting because in when in MS you may show like a false positive lupus test because it’s kind of non-specific but what it’s telling us is you have an autoimmune condition. It’s just a matter of where is that autoimmune condition affecting you. With MS it’s always like the central nervous system but not as much the spinal cord.

Yes, it can, but it tends to not be as active other than maybe cervical and sometimes thoracic. Rarely if ever lumbar and if you look at NMO, it’s always optic nerves and it’s always spinal cord. So, the way I can look at NMO is it’s it sounds just like MS because MS gets optic nuritis, NMO gets optic nuritis. The key difference I can tell you is NMO’s optic neuritis doesn’t get better as good as as MS does. So, it’s this MS, you know, it’s kind of like this optic nuritis that just doesn’t want to get better. It just won’t. The vision doesn’t come back as quick as MS and then it hits the spinal cord.

So, you know, the nice thing about um you know, with NMO is you don’t see a lot of brain activity. You’re kind of like, well, god, it sounds like MS, but it’s again location. Where does it affect the body? And for them, it’s both optic nerves, not just one.

It’s common for them to get bilateral optic neuritis and spinal cord lesions which is you know kind of uncommon for MS like they get optic nuritis usually unilateral to get both and to get spinal cord I always tend to think NMO and the nice thing with NMO is now we have antibbody testing to say if I have a couple of these that you know they have blood pressure issues they have had some small vessel strokes they’re older and I look at their MRI I’m like well crap there’s activity there it’s not clean as we used to say with like we’d see an NMO. Um, but the antibodies come back positive.

And what’s nice now is I had one lady, one episode of optic nuritis. And I’m like, you know what? I’m just going to test her, you know, for NMO. Her NMO was positive. And I’m like, thank God, this lady has zero spinal cord lesions and her second eye is perfect.

And her first eye is coming back, but I’m going to put her on disease modifying therapy. this lady, you know, is hopefully, you know, God willing, knock on wood, she’s not going to have any spinal cord lesions with this disease modifying therapy because I caught her so early rather than it saying, “Hey, you have MS.” I I think everyone with MS, I I send off antibodies, if you’ve had epic neuritis, you get NMO antibodies just because you’d be you kick yourself if you missed that diagnosis. Yeah. Does that kind of make sense?

So kind of the way I kind of tell these is location and and that’s why, you know, lupus gets these white matter changes, you know, on the brain, but they’re not in the same location. So MS is all like monopoly. It’s like location, location, location. It’s like very heavy around the ventricles.

It’s very heavy in the brain stem. can get the optic nerves whereas lupus just is these small little dots and it does very looks non uh specific and you don’t see a lot of the true disability progression like you see in MS but you get the dots and you get this positive ANA so it kind of makes you think okay something’s going on but does that kind of make sense so so they all look and sound different yeah that that makes total sense doc so let me ask you this you’re talking about the lesions and and where they’re at the spine or the or the brain and you’ve seen my lesions And I know I never ask you on my lesion count because to me it doesn’t matter.

I mean it doesn’t matter if I have 10 or 110. It’s not going to affect what I’m doing today. But like talk about like it the the the the differences on where the lesion placements is and how it affects you and kind of explain to me why I’m still able to walk like I still can and I’m I’m able to do what I can do for having this MS as long as I can because I I honestly I don’t know why I I mean I have the spine issues. I’ve had surgeries and people are you know they say you can still walk and I’m like yeah I can. you know, how you know I I honestly don’t know.

So, is it am I just lucky the lesions aren’t in the right spot or what’s the what what’s the story on where the lesions are? Yeah. So, so very good question. So, you know, and and really so there’s and there’s kind of like three parts to the lesions like do do you still have activity? Are they enhancing? So like when I were to look at an MRI and you I may see lesions but if I’m not seeing them light up with contrast that makes me feel okay these are quiet lesions. So think of like when you have your very first lesion with MS it enhances there’s blood brain barrier breakdown you’re starting to deminate and cause inflammation there.

If that goes on the the plaque that we call it it gets bigger and bigger if you don’t put any if you don’t get on something to stop it because that deination keeps going on and on forever. And then think of like the end. It’s like almost like a shooting star. You know, it contrast enhances it demyelinates. If this goes on long enough, it leaves a hole, you know, meaning that we didn’t get to it in time and it left a hole. I think, you know, you got on good therapy quickly because Joe was kind of aggressive. And I’m kind of like Joe is that I’m kind of really I I pushed for high efficacy.

You know, he gave me the best medicines we had at that time and I went for same thing, what I consider the best medicines because I’m like you. I don’t want holes.

I I can’t do anything about that and that that’s the worst thing I can do is so if I see even active demyelination let’s say you’re not having a flare up but I’m seeing contrast enhancement I’m getting on those I’m doing actar I’m going to look at switching therapies um so that’s kind of the that’s kind of the way I look at it and like you said lesions that that that are in the spinal cord and some MS patients have those those are the hardest because they may get better but boy balance walking strength so Think of like you said location is so important. You can have one up here very out in the periphery.

Get maybe get a little bit of numbness but nothing else. You get one in same size but put it in the spinal cord. Oh my god my arms and legs are numb just from the same size. So it’s really location is important.

And I think with you thank gosh you got on good medicine early even though some of that medicine you didn’t tolerate. you got on copan which was our best medicine for the time and I really think that held you you know and then we found better medicines because Gilenya was a great medicine it’s probably our best oral until we went to these other therapies um but I I definitely think you know we got you early enough and so when when someone says oh my god I have 20 lesions I will say I’m not worried about lesions I’m more worried about the holes the holes make me nervous because if those are accumulating we’re not doing our job we got to you know up the therapy or really up our game in trying to find what can we do to slow the progression.

Does that kind of make sense? Yeah, absolutely. I And you know, I I think that that I you know, Dr. Hannah got me on uh um a med right away real quick. I mean, it was a 10-month wait for me to get diagnosed uh back when I went through my diagnosis, which I thought was forever back then, but relatively speaking, that isn’t too bad. Um I think that was one of the reasons.

I think my age was one of the reasons being 27 years old and I think being in good shape and staying in shape and and staying in the gym and you know just and cuz I I I remember saying telling telling Hannah in in his office well you know cuz I asked him I’m like can I still work out and he goes yeah do everything the nor your your normal way your body’s going to let you know when you can’t do something and I said to him well screw MS man I’m going to I’m just going to I’m going to I’m going to kill it in the weight room and that’s what I But, you know, I didn’t know if that was the right way to do it or the wrong way, but I think that that helped me to to still be able to be walking today because that’s the that’s the kind of the attitude that I took with it.

And and you brought up two good points. One is, you know, activity level is so critical to to kind of keeping this this process in good shape. And then the one thing that is probably the worst thing for you could be on the best therapy, but the the toughest thing for MS is smoking. And I know smoking is so hard because you know nicotine is so addictive and I get it. So and it’s hard to quit but man it is like a brush fire waiting to happen. You know smoking and MS are just such a bad combo.

Um and those are some of the things that I and the other thing is interesting is and this is something we always used to joke about but one I mean I did probably 21 clinical trials just with MS on all MS medications over my last 25 years. And one of the things we always used to always joke about is that have you ever seen a vegan get MS? And I’ve never seen nor has anyone else I’ve known. And it’s interesting. So wow. What I’m not what I’m So think of it is that like you know veganism is kind of a very anti-inflammatory diet.

Now you we know that if you have MS and and and you and you just kind of go with this and I always say if you can’t be fully vegan, add vegetables, add fruits to your diet because it really makes a difference. It may not be what you love, but it’s what’s better for you because all that stuff decreases inflammation. And then the other key thing that non-med um you know to do with at all is vitamin D. If your vitamin D levels low, people think it’s just a vitamin. It’s a hormone. And that hormone is one where if it’s low, auto activity, autoimmune activity is higher.

So if you just take a low D level and raise it, you’re actually going to do more for your MS than probably most things. So, whatever disease modifying therapy you’re on, activity, diet to some degree, if you can’t go vegan, I will say, you know, because only 4% can actually take that advice. And that that makes sense, you know, I I would do better with veganism. I can’t do it either. I just is the way it is. Um but but I but I could certainly add more vegetables and fruits and I’ve been doing that. Um and the other thing is um you know, activity level.

We talked about diet, um, smoking, those are those are the biggest things that I think that, you know, if we look at those things, uh, and I always say the other thing is, you know, if if you have MS and like, well, you know, I’m worried about my kids getting MS. Like, what do I do? You know, there’s this genetic testing, you know, but you could have the genes for MS but not get MS. But I always say the most important thing you could do with your kids is check their vitamin D level. And it’s weird. If you look at a family of MS where MS is really strong, let’s say, you know, you have MS, you have five kids.

If you check everyone’s D level, they all may be normal, but one kids is really low. That’s the kid to watch. And I always say if you catch that kid early and supplement his D, there’s a study now with the NAH is that if you find low D and correct it, will they not get MS? So, it’s one of those things that, you know, it doesn’t look it’s not a sexy study to do because there’s no money in it, but I think it’s I got I got some data that might blow that out of the water, though, doc. Man, I was drinking me and my brother, we we would go through like 10 gallons of milk a week when I was a kid growing up.

So, I think I got a lot of vitamin D growing up. I still got MS. So, I don’t know. No. No. So, and so it’s interesting. So we, you know, if we look at it, it’s not so, you know, if we look at it, there’s genes, there’s something that activates the immune system and, uh, you know, and that could be a virus. Epstein bar is pretty common. So, so there’s definitely a genetic predisposition. And I do actually have one set of twins, identical twins, one of with no MS, one with MS. And it’s weird because one got mono, which is kind of like one of these precursors we think Epstein bar. One got mono, one didn’t. one got MS, one didn’t.

So, there’s something there. There’s definitely viral activation or something that stimulates the immune system, low D can be an issue. But the biggest thing is, you know, and I always say, you know, where you live above the Mason Dixon line actually counts because if you go to MS, if I were to go to Florida and start an MS center, I’d be broke because there’s there’s really not a lot of MS done. You would think there would be and there’s probably a lot of snowbirds that go back and forth, but it’s just not common like it is here. So, we know that Yeah. Yeah. But it plays some part but definitely is not all the part. For sure. Yeah.

So, let me let me ask you this, doc. Um I Joe diagnosed me relapsing-remitting back in 97. I have never been changed. You haven’t changed me. Um I don’t even my my my disease has gotten worse, you know. I I know that, you know. I mean, I went from walking around being able to golf 18 holes to, you know, you having to use a rollolator or a walker or a wheelchair. Um, why haven’t I been moved to that primary progressive or secondary progressive? Because I honestly don’t know. Not that I care because it’s just a label to me, but I just what is what what makes me relapsing-remitting and and why am I not primary progressive or something else? Yeah.

So, so good question. And if you look at primary progressive, you know, so relapsing remitting is the most common type. There’s 85%. And they truly when you look back on your MS you can think of it you truly got symptoms they got better but maybe not 100% then you got another one they got better but not 100%. So it just keeps like the like the stairs keep climbing. So it’s almost like every lesion brings on a new set of symptoms but they don’t get fully better and that’s relapsing remitting. So over time and if you look at it you know you got diagnosed in 97. Mhm. think you had how old do you think you had symptoms before that? Most people do.

So, the interesting thing, doc, when I got done playing football in Michigan in ’92, I was in a car accident in 93 and they took me to Metro Hospital, they did an MRI on me to check me for a concussion. And then and the and the doctor in the ER, he came into my room after that uh after they did the MRI and he said, “Hey, your head’s okay for concussion, but you might want to follow up with a neural. There’s signs of MS.” That was when I was 23. and just got done playing football. And then it was five years later when I started to trip and my vision, you know, that that was when optic neuritis set in. So I I didn’t have any signs.

I mean, I ran a triathlon in that time period from 23 to 27, I ran a triathlon and and so I wasn’t feeling anything. But then I started to trip and then within that 10-month period, I went from tripping to my eyesight to getting diagnosed. And and I always say how long like you like you’ve been diagnosed for you know 20 20 it’ll be 29 in in the fall in October and I would say you’re over 30 because you know I would say 92 forward you probably had it you know just because those changes were on there I mean if think about it not even a neurologist maybe but maybe even just some Joe Blow saw the lesions and said you need to see a neurologist.

So they were there and I always say you know you’re 30 plus years. So when I look at that relapsing remitting with time it all you always tend to get many of them and one thing these better medicines have done is they’ve pushed back secondary progressive.

What used to be and this is a true fact if you look at it 90% of MS patients when diagnosed within 10 years you used to get secondary progressive and so instead of this relapsing remitting it just seems like you stop getting any flare-ups this is secondary progressive and just get accumulating disability no matter what you do it just keeps accumulating and whereas primary progressive very different like they look they start with really nothing that even looks like a flare up. They just say, “You know what? I’m walking a little funny.” And then two years later, I’m walking a little more funny. Five years later, I’m using a cane.

So, primary progressive is this rare bird that just looks so different. It never gives you like a a hit over the head, like you know, you’re worse. It just keeps accumulating disability on a on a really linear scale that just keeps getting worse. So primary progressive is rare 5% and they start off with some walking issues and then just l literally every year it just feels like it keeps getting worse. Whereas relapsing remitting does that up and down 85% but then and if we look at it now this 10year thing doesn’t exist. I have patients who just they’re not really into secondary. they haven’t hit that.

I just keep getting worse because you if you look at it, yeah, you have some good or bad days, but you’re still able to do a lot. Like you can get up, you can move around and and with secondary progressive it’s just like they lose that and then it just keeps getting downward like wheelchair that kind of stuff. Um so so if you look at it secondary progressive one good thing about these disease modifying therapies is we don’t see a lot of secondary progressive anymore. And the reason is is that probably because now these therapies that have come on since you’ve been diagnosed. I mean you came on right when med started.

So secondary progressive which used to be inevitability 10 years everyone had it. You know some people in five years some people 15 years but everyone got it by that 15ear mark before we had good therapies. Now people are so far out that we don’t even know if some people get it at all because of the the medicines they’re on. Does that kind of make sense? Yeah. That’s awesome. That’s awesome to hear those that that data. Yeah. All right. So, here’s here’s this is one of my last questions before I’ll start wrapping it up.

And and I know that I didn’t get diagnosed by you and and Johanna, he mentioned it, but it wasn’t really pushed. if you get somebody that comes into your office and you end up giving them that diagnosis of MS and um do you do you mention mental health and and getting into to get to see a counselor because I know that when I got that diagnosis when I was 27 I didn’t address the mental part of it but I don’t care who you are it’s going to affect you mentally you know I I it might not affect you right then and there but it’s going to this disease is is it just it just beats the hell all out of your mind.

So when when you’re diagnosing a a patient today, I is the mental health brought up because if it’s not, I think that that needs to change in in the health care system. Absolutely. You know, and what I’ve noticed now is that we really shifted like you know, and in even in my 25 almost going on 30 years since I’ve been doing neurology, 25 practicing, um we were very paternalistic, meaning I could just say, “Brian, this is what you’re going to get.” And that’s what the what I like and you’re just going to have to lump it because this is my medicine. This is what I use for you.

Um and it’s really now so engaging like where I like to see like how they are with handling the diagnosis. I like to go over how far MS has come and I like to go over the journey of MS with people where we started. You know how when they see MS in their head they think I’m going to be Jerry Lewis or I’m going to be in a wheelchair. You know what I like to say is that you know catching people early now is a big thing but mental health is so critical because depression if you look at it you know people on the injectables avanex the depression rate was 80%.

And we didn’t know that because we never asked but it was that high so you know those you know because number one think about it they made your whole weekend all the only thing you had to look forward to is your weekend. You took your med and your weekend was ruined. And I always say, you know, uh, you know, you’re if you have a disease that you have to think about every single day because either you’re taking a medicine every day or it’s getting worse every day, no matter what, you’re going to have to have that addressed. And and what’s kind of nice now is that we have medicines that definitely do a way better job.

And if they’re started early, like we kind of used to say, well, I’m going to toe in the water and give you this kind of baby medicine. I I kind of am really big of like I don’t go anything below Mavenclad. like, you know, Mavenclad is my lightest medicine. If you came in my office, here’s where I’m going to start and if you fail this, I’m going to go higher, but I’m not going to go any lower than that because I want to make it so in 10 years, you’re walking in here and you’re talking and you don’t really know there’s a problem going on.

Uh, and if it’s not following that pattern or metric, I I want to switch and convince you that we’re going to keep moving until I find something that slows this down or or halts it. Um, but but you’re right. So, so now I can pretty much gauge, you know, now it is a, you know, rather than me just telling you what it is, it’s a choice where I say, you know, I these are options I like, but I want you to look at, you know, and I I rather than saying go home and look at 31, I will say, look, these are my top three and the and here are the reasons I like them. And you may have a friend who’s on X, Y, or Z, we’ll we’ll include that one.

But I will say read over what I give you. We’re going to come back and we’re going to go through questions and I want to see what you think is the best fit. So I really include them in it because I think if you don’t then you’re in that’s where you run into the biggest problem. So you know because then that paternalism is you’re not going to catch the depression, you’re not going to catch the anxiety. So I mean the good thing about us here now is we have mental health next door. We have counselors available and same thing with my practice when I had it in Suski is right across my hall was mental health.

So I always like to say is that here’s a counselor and you know at some point I want them to just do a baseline visit because the other thing is that if you have active worsening depression I don’t care who you are in my opinion your MS will always get worse like it’s not a mind over matter but you can’t convince me that mental health doesn’t affect your physical health. It does. So, absolutely, man. Just just like stress. I think stress is huge. You know, stress I was just gonna bring that up, Doc. Man, stress has been my killer. I know you you talk about it with me at our appointments.

I I mean, whether it was when I was working, I mean, that stress, man, any kind of stress in my life has put me into a flare, put me into an episode. Um, and I I try telling people all the time, man, you gota I know it’s hard to do, but you got to try to avoid stress like the plague with this disease. And you know, even in your case, one thing that I liked is that it took us a while, but the best thing is that, you know, number one, your specific disease taught me how uneducated even a health care system. You you’re you were working for a health care system and they couldn’t even see that.

Oh, Brian just walked down this long hallway. you know, maybe the elevator’s broken, take the stairs and, you know, navigate your way through a hundred different boxes and try to get to your office. You know, it just it just blows your mind. It’s like they’re a health care system. They should know better. But so, no one knows better, you know, at at the end of the day. And and uh and I always tell people is that I would rather take them out of the game early and have them have a good body left with some stuff to do.

So, I mean, I always say, listen, if at at any point like disability, I never look at that as like a cop out or a weak point because I would rather have you have good years doing the stuff you love to do than killing yourself for a boss who doesn’t care about what you’re doing, you know? And that that’s Amy, that job would have killed you, you know. I really think you probably added less disability progression over the next 10 years by getting out of that type of job stress. Yeah. And look at I, you know, now now I’m doing this podcast thing. I’m talking to you, man.

I mean, it’s a way bit better better gig in my opinion for my mental health and everything, man. It worked out. Hey, doc, man. I really want to thank you so much for coming on and joining me today. I would do this again with you if we can figure out how to do it. Um, you know, just line it up again because I I I can I can literally ask you questions all day long.

I mean, you you got you know, I I just I You know what? do if if you want to even do like if you get like a bunch of questions like what about this what about that if you want to even do like a followup in four to six weeks and just say hey I got all these questions people are wondering about this or that or we can go get some specific ones if that’s easier. Yeah, because I’m like you like I you know I I get it you know chronic diseases are tough but you know that that’s the key with MS man it doesn’t take a day off and that’s the thing that’s the way you have to think about it is am I doing the right thing? Am I on the right meds?

Am I making sure that every other little thing I us and we can’t do everything, you know, but the question is, can I do something different if I’m getting not getting the results I want? Yeah, absolutely. All right, Doc, man. Thanks a lot for joining me today. I’m going to get going. Don’t forget to hit the subscribe button. Don’t forget to hit the subscribe button and share it out. Um, we want to be understood. Best way to be understood is to listen to us talk. Till the next episode, this is Michigan man 64. I am out. If you like this kind of content, please like, share, follow, and subscribe. And as always, go]