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Move It or Lose it - The Podcast
Move It or Lose It | Episode 137 Part 2 | Dr. Joshua Katz: Helping disrupt ideas about MS treatment
00:57:46
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Foreign.
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Your host, Kathy Chester.
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And welcome to the Move it or Lose it podcast, a podcast about all.
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Things that move the mind, body and soul. The Move it or Lose it podcast is for information, awareness, and inspirational purposes only. I am not a doctor and I don't even Play 1 on TV, so please consult your doctor before making any medical decisions. The views expressed by advertisers, guests or contributors are their opinions and not necessarily.
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The views of the Move it or Lose it podcast.
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Welcome to Move it or Lose It. We are Back again with Dr. Joshua Katz. We have been talking about all sorts of stuff. We've been talking about Ms. And some of the clinical trials and we've been talking about hsct. And the last one you might have remembered. Hannah Butler shared about her experience with hsct. And today we're going to let Jacob and I'm going to speak for and let him share his experience with HSCT. And Dr. Katz is here and he's going to help explain things that I won't be able to. And I'm so grateful that he's here. So thank you again, Dr. Katz, for being with us.
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C
Yeah, my pleasure. Well, thanks for having me back.
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B
Absolutely. So, Dr. Katz, you were so insightful. Thank you for sharing your thoughts on Hannah's. Hannah's experience that she had and making her feel better that she. With her gut and that she doesn't have that. I think that was beautifully said, the words that you gave her and not regretting it, but understanding when you're in pain and don't feel like you're going to get better and you don't know what to do, you did what your heart said and you did it and you don't go back and second guess it when we're feel like there's no answer. You did what you felt was right and who knows what it would have been if you didn't or did.
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D
So.
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B
Jacob, you are up, sir.
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C
Hello.
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B
Please share.
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E
Thank you. My name is Jacob Kinch. I live in Boise, Idaho and I've had. I was diagnosed with Ms. Like the 8th day of 2018. So I started like really quick out of the gate. I started on copaxone. I couldn't. They did. I can't remember what the test was. I believe it was like they. They checked for something called like the JC virus. Is that accurate? Where I couldn't start Ocrevus.
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B
Okay.
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C
And wait, that would be a test to see if you could be on Tysabri.
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E
Yeah, I totally mixed that up.
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C
Well, happens all the time.
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E
There was something that they said where. I couldn't do. I couldn't do ocrevus either.
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B
I could.
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E
I don't remember what that was. And just so you know, when I was diagnosed, they diagnosed me with relapsing, remitting. And the way that they were able to tell me which version I had involved, like, I was already diagnosed from an mri. And then they were like, oh, we could tell you what kind of Ms. You have through a spinal tap. I've had multiple neurologists since tell me that that was ridiculous. Yes. And also I had the dural leak with that spinal tap and never again.
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D
Same here, man.
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B
Oh, gosh.
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E
It was so bad. It was so bad.
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C
So I'm going to take a moment to defend the spinal tap, okay? Just because. Two things. One, you're correct. You can't diagnose what kind of Ms. Somebody has by looking at their spinal fluid. You can't even really do it by looking at an mri. The only way to do it, really, it's a clinical diagnosis, okay? It depends on how you look, which is one of the reasons why it's probably not even that accurate. Because basing diagnoses on some of these symptoms, some of us are really good reporters. Some of us are under reporters, some of us are over reporters. And so it mixes things up. But the dreaded complication of having a spinal tap is these spinal headaches where every time you sit up, you get a bad headache, and they can last for a long time until you get something called a blood patch procedure, which I. Yeah, maybe. Maybe you had. We used to think that the way to prevent that was to lie you down for six hours after a spinal tap. Well, turns out that didn't matter. And then we thought, okay, you got to hydrate really aggressively. Then that doesn't really matter. The one thing that does actually make a difference is the kind of needle that you use. And so there's a different kind of needle where the opening is on the side instead of sort of at the front of the needle. And if you use that, risk of spinal headaches is very much lower. And since I went to using that kind of needle, I won't say it's zero, but it's just about zero. The number of people with headaches afterward. But the good news is just saying, these days, we rarely need to do that to make the diagnosis. It's only in cases where there's something odd about it or you really aren't sure. Most of the time, the MRI and the clinical symptoms can make the diagnosis. Sorry to Go wild.
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B
No, it's interesting because I never, I never had my. I had spinal meningitis and I never had a spinal tap for the Ms. Actually, I had it for meningitis. So interesting.
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C
You didn't have to have two. Not that they're that bad.
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B
No, I had to. I had it twice. I had it as a child and I had it again at 20. I was like, can I? Who has that twice? But interesting.
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C
You didn't have to have it three times.
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A
Yeah, good.
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B
Exactly.
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A
I cannot tell you how excited I am to announce my partnership with foot Scientific. Their Elevate360 drop foot solution is amazing. It's lightweight, it has customized sizing which is amazing. I've been in braces where they are much too big and bulky. This one has memory foam. It's comfortable. I have walked my dog, I have run with it already, I have danced in it. And it is amazing. It has stainless steel anchors which you can wear them in any shoe you want to. But to be able to have them connect to your laces so that you can lift the foot so that the drop foot isn't so bad and know that they're safe in there is so incredible. To be able to have this, to be able to have it on your ankle and then attach it to a tennis shoe, to attach it to a heel actually, or a sandal is absolutely amazing. I cannot tell you how excited I am to be a part and partner up with Foot Scientific. They are truly here to meet our needs. So I encourage you to go on.
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B
To the website@footscientific.com check them out and.
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A
Of course use my discount code. It is Ms. Disrupted, all caps 30 and you'll get $30 off your pair. And also don't forget, 60 day guarantee. If it doesn't work for you, then you can return it. And that is why I love But Scientific. They are a company that truly cares about our needs. So don't forget, check them out. I love my partnership with them. Have a great day.
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B
Jacob, go ahead.
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E
Well, with the spinal tap, I actually never ended up getting the blood patch to fix the duraleak. This older nurse who I, who I spoke with at the hospital, she just told me, she's like, she's like, listen honey, you just need to drink some caffeine and that can sometimes help. And it actually did work.
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B
Okay.
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E
I was, I was so surprised by that. I drank like two day old coffee and I was just like. And then I started to feel better shortly after, which is an insane fix.
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C
But you Know what happened is that the hole healed itself up and you didn't continue to leak fluid, otherwise you would have continued to have a headache. And the caffeine does make the headaches better. So you, you fixed yourself?
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E
I. Yeah, I guess and you know, coffee. So, you know.
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B
Yeah.
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E
So what happened was they, they got me on copaxone because I, they, they couldn't do any of the higher, the higher efficacy drugs. And I just wanted to do the lightest thing since it was so new. So I got on Copaxone and my mobility was fine. Like, so the thing that first alerted me that I had Ms. Is that my right leg started to go numb from like my foot to my knee. And so after I got on Capaxone for about three months, the numbness spread to both legs and then up to the middle of my thigh. And then I started using a cane. And I'm not saying it was the copaxone's fault, but it was like, it was that the timeline was like on the same.
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C
Well and we usually don't expect the, or especially the earlier disease modifying therapies. They don't really even start working for about three months. There is a sort of a momentum that Ms. Has that's very hard to stop in under three months even for some of the higher efficacy treatments. So going on copaxone and having your disease continue really shouldn't be considered a failure of copaxone, you know, in that short period of time.
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E
Yeah, my current neurologist agrees with that. She like. Yeah, she was like, she's like, I think you were. The progression would have happened regardless, just, you know, based on the fact that it takes the drugs that long to work. Yeah, So I was on Capaxone for about seven months and then I went to a new neurologist who wanted to start me on Gilenia and so I did Gilenia and oh boy, Gilenia made me so sick all the time that I basically, I stopped eating like consistently. I, I got down to about 138 pounds. It was.
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C
What were you sick with?
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E
Just my stomach. Like if I, anytime I took Gilenia I would just, I couldn't, anything I ate came back up and boy that.
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C
You know that that's a relatively common symptom with Tech Federa and the. Not that common with Gilenia. That's interesting.
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E
Yeah, it was, it was, it was bad. I don't know why it was so bad. Yeah, it was. Yeah. So then I, in 2019, so I was living in Seattle when this all. When I was like diagnosed so then in 2019, I moved to Boise where my family was, because I was starting to have, like, my progression was getting worse. And one of. One of my neurologists suggested that I start looking into assisted living, which was. That was a hard. That was a hard thing to hear because, like, I couldn't. I couldn't do stuff on my own as much as I used to be able to. And so I. That freaked me out. So I was like, I was 35 years old at this point, and I was like. I was like, I'm moving back to where my family is. And then in the summer of 2019, I had a really bad. I got really, really sick with Gilenia. And then I ended up finding. I ended up seeing something on a Facebook post about somebody who just had gotten back from. From Clinica Ruiz. And so I contacted her and we had a conversation. And then I contacted the clinic themselves and I had like 20 conversations with them because I overthink everything and I had to ask every question. And so I decided I was going to go in May of 2020. And then covet happened. So they pushed it out to September. But so, yeah, and so this was like two years, two and a half years post diagnosis. And I. I actually had a really good experience, like, similar to Hannah, like, like with like the people and everybody and the staff at. At Clinic of Ruas. They were awesome. And I had really good. I had really good results for the first two years. Here's what happened. So the. So the first. So after I got done with my stem cell transplant and everything, I came back, I was doing great. My. My progression felt like. Like I. It definitely felt like it had stopped. I was starting to walk without my cane and I was able to do things, like, more that I would, that I enjoyed. I even got like. I work in the audio industry, like in. In video games.
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B
And my kids love this part. They think he's super cool.
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E
So I basically, I make sound effects for film and video games. And I hadn't worked for a while, but then I ended up getting like, a job, like a really good job, like, remotely. And then I was doing amazing the first two years. Then in 2023, I got Covid and it was like, it unraveled everything and my numbness. So what happened is. So my numbness was always up to the middle of my thighs. And then after I got Covid, I felt this, like, tightness, like, you know, like a girdle. So I had a friend who'd had a friend with Ms. Who had he Called the Ms. Hug. I thought I had that. Well, it never went away. And then I did. I did. Did another mri and I had some progression in my spine and my numbness is now, like, to the middle of my chest, which is really annoying.
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C
Yeah. Well, so your MRI showed ongoing disease activity. It sounds like after.
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E
After Covid.
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C
Yeah.
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E
So the first two years after hsct, there was no. There was no progression. And in one of the lesions in my brain had gotten smaller.
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C
Yep.
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E
So I say that as if that, like, actually means something because, like, they had also got, like, they'd updated their MRI machine.
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C
Right.
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E
So it could have just like, because it's brighter or more dull, depending on.
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C
Yeah, hard to know.
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E
Yeah, it's hard to know, but I did feel cognitively better, so.
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C
Well, and you got in a very effective treatment. I mean, there's no, there's no question that even non myeloablative HSCT is a pretty good, you know, it's an immunosuppressant that affects the immune system. It's. It's a pretty high intensity treatment as they go. So it's not a surprise that that made a difference for you, which is good to hear. It's also not a surprise that having Covid or really anything that sort of revs up your body's immune system in some cases can, you know, can trigger a relapse and, you know, an ongoing disease activity. This is one of the questions that I have about hsct, especially if you're using a non myeloablative regimen, is, you know, how long is that good for? And I don't think we know the answer. And there are other medications that are given intermittently without continuous treatment. So Lemtrada is one of them. Lemtrada is an IV treatment. We don't use it so much anymore because there are a lot of complications with it. But it's actually used as conditioning prior to stem cell therapy in some regimens. And there's also Mavenclad, which are pills that are given in two cycles. You get five pills, and then one month later, another five pills, and a year after that you repeat that cycle, and then you don't do anything unless you have disease activity. And with both Lemtrada, Mavenclad, and hsct, the question is, have you cured Ms. Or not? And if you haven't cured ms, when is it, you know, does that mean you have to keep monitoring? And how do you keep monitoring? And do you wait to retreat? Somebody with another disease modifying therapy only if they show disease activity do you wait for that to happen or do you treat them before that happens? These are questions I don't have the answer to and these are things that we're trying to figure out. If we had good biomarkers that could predict who needed to go back on therapy and who could stay off therapy, that would be helpful and those things might be coming. I don't think we're quite there yet though.
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B
That would be very helpful. Very helpful.
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C
Yeah.
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E
Yeah. It's so my experience with hsct, like even like where I am right now, I would still do it again 100% like if, if I had that money, if I, you know, that 55,000. If that, that magically showed up again. Hint the Internet.
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A
I'm just kidding.
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E
But no, if, if I would do it again in a heartbeat.
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C
I'll take my question though. I wonder. I can't figure out what condition you would have that would disqualify you from getting an anti B cell therapy like Ocrevus, Brienvy or Q symptoms. But that would be okay to get stem cell therapy which requires an even more severe depletion of your immune system. So I'm not sure what, what it was that disqualified you from those.
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E
I was born a carrier of hepatitis B. I don't full on have it, but I was like born a carrier. So my liver is, has always been.
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C
They're concerned about reactivation of hepatitis B. Yeah. Yeah. I mean I would think that that could also be an issue with stem cell therapy. But yeah, it's interesting.
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E
It's interesting because like I went through a whole thing with clinic at root was about it like getting different blood and what blood work, blood tests for them and it didn't seem to be an issue. It was the only time I had like it was like activated like was when I was on Gilenia. It just like it was like really bad and then they had to put me on another medicine to deal with, to deal with the effects of Gilenia.
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C
Yeah.
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E
But I never had any effects like after clinica ruas with the chemo and that's interesting.
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C
So are you doing another treatment now?
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E
No, I'm not doing any, any treatments. I, yeah, I'm. I don't like the way that the DMT's make me feel and, and honestly like the cost if I have independent health insurance and like even with it's like limited in what they'll cover and then what they do cover, it still is like 3,000amonth for the drugs anyway, which that's, which is insane. So.
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C
Yeah. But just to let you know, not that this is a reason to do it, but most of the medications have co pay assistance programs with that cost.
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E
Yeah.
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C
And should be. I mean, I can't speak to your specific insurance in your state and what the laws are there, but if there's a big copay, usually that ends up neutralizing to just about zero.
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E
I did, I did, I did have some copay insurance with like Novartis for Gilenia.
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C
Yep.
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E
The, the, my main stopper with the, with the DMTs is the, the liver issue with like the hep. With the hep carrier.
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C
Yeah.
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B
What would be safe for liver?
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C
Yeah, I mean, I think it kind of depends. I mean that would be what we typically do in people who test positive or who have latent hepatitis, either C or hepatitis B is we haven't consult with a hematologist or not hematologist. Infectious disease doctor. There are medications that people can take that basically suppress hepatitis B. So I have a number of people who have tested positive and we keep them on that treatment for at least a year after they discontinue anti B cell therapy. But you'd have to see you talk to an infectious disease doctor. So if it ever became absolutely necessary for you to do a treatment, it might be that B cell therapy isn't completely excluded for you. You'd have to investigate.
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E
Yeah. And I, and I have talked, I have talked with an infectious disease doctor and actually when I was on Gilenia, I was like taking 10 off of here.
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C
Yeah.
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E
So which, yeah. Which kind of was like, it felt like the, the way I understood it, which it felt like it was like a balancing act, you know, so sort.
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C
Of tenofovir basically blocks hepatitis B from being able to, you know, make DNA and be active. Yeah. You know, if your immune system is functioning normally, you don't have to. It'll suppress hepatitis B on its own. But in the circumstance where you basically open the bottle of hepatitis B, want to make sure that, okay, if you have that bottle open, it can't do anything. And that, that's the, the idea behind tenofovir.
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E
I'm open to like. So I actually have a good friend of mine who was like diagnosed with Ms. Recently and like some of the new drugs, like, like Mavin Clad and like even CA and stuff, like seems promising compared to like a lot of the older drugs.
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C
Well, I think even more promising are the BTK inhibitor drugs which are coming out, which have done trials. At least one of them called tolebrutinib, did two phase three clinical trials. And in both of those clinical trials, it did have an impact on disease progression in a way that suggests it's doing something different from our current medications and in a good way. I think we're hopeful that if we have drugs that can penetrate the central nervous system and can affect a kind of inflammatory cell called microglia, which are part of the innate immune system, if we have drugs that can do those two things, we think that they may have a significant impact on progressive disease. And in the clinical trial for tolebrutinib, it looks like it may be doing that. And so these BTK inhibitor drugs, there are a bunch of different ones that are under investigation. And you know, it may be this could be the next big step forward. So I would say just keep your eyes open for opportunities for treatment.
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E
So I'm going to, I'm going to round it back to the HSCT thing. Kind of echoing what Hannah said. I'm fully like, I'm like really happy that I did it. I. Yeah, for me it was one of those things where it was like, I don't like wondering what if? And it was like, it would have been a big what if? I'm glad that I did it, I would do it again. But when anybody asked me if they should do it, like, that's, that's always a tricky answer because I'm like, well, you need to do what is best for you. And that includes like, what, like, you know, whatever, like dmt, you take whatever, whatever you do for your ms, because it's. Because the thing that is awful about ms, aside from just that it is ms, that it affects every single one of us so dramatically different. So it's like you can't compare notes. Like, it's just like, it's like maybe, like some things are accurate, some are not. But so, but specifically when it comes to hsct, like, I'm a big proponent of people like, you know, talking to your doctor, talking to the Clint talked in whatever clinic you're going to get it done at, and especially talking to other people who have done it about their experiences, because I think that all that information is really important for it.
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C
I'm glad also that you're not looking back and second guessing your decision because I think the best that anybody can do is to take all the facts in front of them and try and make the best decision that you can. It's not always going to be the right decision, but, you know, the best thing that you can do is be able to look back and say, you know, what I know why I did what I did. I think it was a reasonable decision. I would do it again if given the same information going forward. And it's not very helpful to look back and say, ah, you know, knowing what I know now, yeah, maybe I wouldn't have done it. But you don't know what you know now. And it sounds like that. That isn't to suggest. It sounds like things went fine for you. So it's. I think you have every reason to think you did the right thing anyway. But I'm more thinking about how easy it is in general if people aren't doing well, that they have feelings of guilt or like they, you know, they spend a lot of time looking back and wasting a lot of mental energy on something that doesn't get you anywhere constructive. You know, it's just, I think the best thing that people can do is going forward, make good decisions. Right.
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B
Just 100.
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C
Investigate thoroughly. Make sure you get people's opinions like, you know, from your Ms. Specialist for your doctor. And then, you know, go forward knowing that, okay, no matter what happens, I know I made the right decision.
- [24:08]
B
Yeah, well, especially too, knowing that Ms. And depression are linked and it's, you know, our depression is a part of Ms. The last thing we need is to be second guessing every decision we've made. We know that that is just a recipe for disaster for us. So we don't need to be doing that.
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C
Depression life.
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A
Right?
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B
Yes. Having children, that's not having children. Y. There's so many things. But definitely, I think I appreciate, I trained both of. Both of these guys and I appreciate their, their just tenacity and they're, they're just really great people. And so I love having them on this. And I also just love their, their spirit and they're just, they're. They're both like that, very driven. And I want to do what's best for me and my body and I. And not looking back at what should have been, but just making that next step each day to do the best they can for their bodies. And so I've always really appreciated that in both of them. So. Really, really good. And just, you know, making each day the best that they can and, you know, with this crazy disease. So I just really appreciate all of what you've been saying, Dr. Katz. And now I want to ask you a couple questions. Dr. Katz, as you are getting through these clinical trials and, and really some big promising ones, what are you most excited about in this next year?
- [25:34]
C
Well, I have to say the BTK inhibitor Drugs because it's one of the biggest unmet needs right now. It's not that I wouldn't be excited about an effective treatment for relapsing ms, but right now our arsenal is so good.
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B
Yeah.
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C
And you know, our arsenal for progressive disease is so wanting that any step forward there will be welcome. And I do think we're getting to a point where that's going to happen now. And I tend to be pretty cautious about my optimism, but everything that I've seen suggests that we might be able to be taking a big step forward.
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A
Yeah.
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C
People have asked me in the last, it must have been five years now that people ask me, well, what's new in ms? What are you excited about? Like I've been saying, ah, BTK inhibitors for like years and I think they're just about to come out. So there's is scheduled to go in front of the FDA at the end of this month and we'll see what happens.
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A
That's awesome.
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C
It is the first of this class of drugs that's going to go in front of the fda. It doesn't mean it's the best. I think this one might have some baggage with it that will make it not for everybody, but again it might be we're going to have our foot in the door for treating progressive disease more effectively than we can now. And that would be really exciting.
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A
Yeah.
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B
Is that an IV or a pill spill?
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A
Okay.
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B
Everyone likes that. Yeah. Like that.
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C
Yep.
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A
Very good.
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C
Yeah.
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B
Okay. What would you say in your full practice of what has been some of your highlights that you would say in the last. I'll give you a 10 year span, I won't make you all the way.
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C
Back that you know, it's gonna sound corny, but the thing that I like most when I come home, a good day for me is when I've seen a new patient who comes in and they're scared. Their whole life has been turned upside down by the diagnosis. And I can spend a lot of time with them. Often I will spend an hour and a half, sometimes two hours with them, maybe with their family. And you know, I tell them, look, there's a lot of things that we're going to talk about today and you only have to walk out of the office knowing one thing, which is that I'm here, I'm going to take care of you and if you've got a.
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B
Problem, you can, I'm going to come.
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C
To you, you can email me. That's what you got to remember. The rest of it, I can go Over a thousand times. But you got to walk out of here knowing that and being able to. We look that. That's traditional medicine is taking care of people. It's not just treating a disease. So that, that's, that's what makes a good day for me. It sounds.
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B
No, it's not corny.
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C
I mean the. When, when Ocrevus was released in 2017, that was huge. I mean that was a, a big step forward in treating. I mean, I was around when the first oral medication, which was Gilenia, came out. And for many people that was life changing. And it, you know, I often don't even prescribe some of these early oral drugs anymore because our current drugs are much more effective. But when they came out game changing, it made a huge difference for people. I never have somebody come into my office on an oral medication saying ah, when are they, when are they going to come out with this? In a shot.
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A
Right.
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B
Can I have more shots? Yeah.
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A
No.
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C
So that was cool. Yeah.
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B
So that Tysabrid came out, that was the. I remember everyone was excited about that and I was on Avon X and then get very excited about to save and everything changed for me. That was very exciting.
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C
Sombreg was a game changing drug. Of course it was overshadowed by its first release where they didn't know that was a big risk.
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B
I was in the middle of getting it when we all got pulled off.
- [29:11]
C
Yeah.
- [29:12]
B
We're like, what's happening? So I remember that.
- [29:14]
C
Yeah. So that was a, you know, a bit of a rocky start and unfortunately ever since then that's shaken people up. That was like an earthquake that the tremors were still feeling today because.
- [29:26]
A
Yeah.
- [29:26]
C
Still scared about.
- [29:28]
B
Yeah.
- [29:28]
C
Pml, which was the infection that we saw mostly in relationship to Tysabri. It's still the thing that people are the most scared of.
- [29:37]
B
Yeah.
- [29:38]
C
And there, there is a risk for PML with some of the other drugs like Gilenia and Ocrevus pre mv, but it's so much smaller than it was with disabrate. But it, you know, so the fear is sort of outsized.
- [29:50]
B
Yeah. I don't know why I wasn't very afraid of that but. And I did become. But it was still low. My numbers went down and I still would have stayed on it.
- [29:58]
C
Oh, I think it's, it's a, it's a very manageable thing. But people still have a sort of visceral fear of it in some.
- [30:03]
B
Sure, sure.
- [30:05]
A
Yeah.
- [30:05]
B
So I do think that we're starting to see a little bit more excitement about things with. With Ms. And the treatment. So that obviously. But like you said, I think that there's some skepticism people, especially with people who've had it for a long time, because they'll say, we've heard all this for a long time, like, whatever, whatever. And so they don't get as excited. Even running support groups.
- [30:27]
A
You'll.
- [30:27]
B
You can tell the people that are a lot older and they've had it and they don't get as excited. And I kind of have to keep them a little quiet. With the newly diagnosed people, I'm like, easy, easy.
- [30:38]
C
So it's very hard for people who have accumulated significant disability because what, what people want most, understandably, is something that's going to repair and reverse.
- [30:49]
B
Yes.
- [30:50]
C
What they have. And that, I think is still far off or farther off. And, you know, we have to stop things moving forward before we can turn the clock back. So.
- [31:00]
B
Yeah.
- [31:02]
C
One step at a time, I'm afraid.
- [31:03]
B
Exactly. What would you say? A question I have. What would you say to patients? I get this a lot in the support groups that don't click with their doctors. And I have to kind of give them permission. Right. It's okay to say goodbye. It's okay to break up with your doctor. You're not married.
- [31:18]
C
Yeah. I mean, it comes up, you know, people sometimes want a second opinion. I'm like, great, get a second opinion. This isn't about me. This is about. It's not about my feelings either. This is all about you. And you got to do what you feel is right. And if it's not clicking for you now, the problem where, where I'm located, I'm surrounded by Ms. Clinics. If you don't like your doctor, you can, you can go on a tour of Ms. Doctors.
- [31:44]
B
Right.
- [31:45]
C
I mean, you know, we, we. I will say we see people from all over, but, yeah, you know, a lot of people. I think in Boise, Idaho, you probably don't have as many options as you would if you were, you know, on the East Coast. So you, if you, if you have an option and you're not getting along with your doctor, you should shop around.
- [32:04]
B
Yeah, definitely.
- [32:06]
C
If you've gone to 10 doctors and you hate them all, could be a you problem. Yeah. I mean, actually, you know, 1 in 10 doctors, it might not still be a you problem.
- [32:18]
A
Right.
- [32:18]
C
Maybe 20 doctors.
- [32:20]
B
Yeah, very true, Very true. But I would. I definitely like to talk about any of the things that you see that are coming, any of the patients that. Any of the negative things that you're seeing with Ms. And some of the, the things that we need to look out for as far as like patients that are, that are not doing well on some things or that are, I mean we're talking about exercise and stuff. Any of like, that's my main thing is obviously move it or lose it. Patients that are, I see a lot of that. Patients that are not moving their bodies enough, that kind of come and then are just very depressed and just not doing what they can. How do you motivate your patients to just move their body, eat better and maybe you will feel better. So that is.
- [33:09]
C
I'm glad you brought that up because really we've been so focused on disease modifying therapies and it's really only one half of you know what you can do. And this is particularly true for people who have progressive Ms. Where medications aren't necessarily the answer. Their lifestyle is going to make a much bigger difference. And it does for everybody. I mean, it does. Whether you have Ms. Or not. All of us should be, you know, focused on our lifestyle. We know that exercise seems to be one of the best things that you can do for your brain and your nervous system with or without Ms. And you only have to do a very simple thought experiment to realize how important it is because, you know, it seems obvious, but if you take two people who are identical, you put one on the sofa and make them minimally active and give them an unhealthy diet, maybe have them smoke and you have the other person, you know, have a healthy calorie appropriate diet, exercise regularly, you don't have to do anything crazy but just get up and move around. If they smoke, they quit smoking. It's just no question who's going to be doing better in a very short period of time. And if you extend that even longer, it's going to make literally a life and death difference over a period of five to 10 years. So yeah, unfortunately it's just, it's a big ask for people who have fatigue.
- [34:26]
B
Yes.
- [34:27]
C
Weakness or muscle stiffness, that doing. Look, I, I hate to exercise. I do it regularly. I find it really difficult to do and I, you know, it's hard to motivate me to do it. So it's these things you can, you can only ask people so much. And yeah, I think the important thing is to set your sights at a very reasonable level. I think I've seen people who said, you know what, I went to the gym, I exercised and I was exhausted for three days. And they just do too much too soon.
- [34:58]
A
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- [36:02]
B
I love it. Go ahead and grab it. Yeah, I definitely, I would say most of my clients, patients are happy. They have the secondary or primary. And that is, you know, we do, we don't go long on time, but we start. Let's get the body moving. Let's just start from there and then see we can do. And it's always very exciting when they call or message me. I stood, I stood in the shower and it's like, okay, we're starting to see results now. So it's like, okay, now I want to get up off the couch a little bit more. But I think that is such a key. And, and it, you know, I think that that's helped me through my life is I, I never stopped moving. I just, it was just in my DNA. It's like, this doesn't make. My grandfather had it, my aunt had it as well. And I saw what it did to them back in the day when it was like, just rest, rest, rest. And I'm like, they're atrophying and now they're. They passed. I don't, I don't. I'm not doing that. It's the one rule I'm going to break. And so it became such a passion for me as a trainer and then training people with Ms. And different autoimmune diseases. And I just find it to be very fascinating that. To see the different ways that people are moving.
- [37:15]
C
With me, you, what have you found is an effective way to motivate people?
- [37:22]
B
It is when taking their money, taking their money, then they, then they're like this. Yes. Making an investment in it. You know, I just, I think just when I have the same thing, being able to look at them and say, let's breathe first if you're nervous, and then kind of getting that down and their nervousness and then starting off and understanding that I have this too. So we're not going to start Doing burpees today, we're going to kind of slow down, and we're going to make this something we both do. I think that camaraderie and. And getting their nervousness down is a big part, but I think when you have something like ms, you've already been sitting for a while, so the idea, like you said, of getting up and going is. Makes them a little bit nervous. And so I think if. If there's a plan that doesn't feel too overwhelming, then it's something. But it's still very hard. Dr. Katz, as you know, they know nobody wants to. And then when you're sick, it's like, well, but I've had a couple of.
- [38:20]
C
People give me the feedback that has been very helpful for them to hear how much I hate it.
- [38:26]
B
Yeah, I always say that. I said, you think I get up and think I can't wait. I don't. But I will take my weights and stuff in the living room. So then I have to move them all to get to the bedroom. So that's. I kind of make it. So it's not. Everybody's going to think that's as exciting as I, but it's. It forces me. I'm either going to have to move all the exercise stuff back again, or I can do the exercise. So I always say put, you know, put them somewhere where you know you're going to do it and make yourself accountable. So I think. And also I'll do like, a Zoom exercise group where there's people on there. So then you have to. You're accountable to each other.
- [39:03]
C
Yeah.
- [39:04]
B
So.
- [39:04]
C
Helps.
- [39:05]
A
Yeah.
- [39:05]
B
Yeah, for sure. So I don't know. How did you guys do it? When I train you, how did you guys. How did it. How did it make. How did you guys get the energy to do it? That I was. I was just going to make you my phone call or that I was going to be on the other end of Zoom. How did you guys hand in Jacob?
- [39:24]
E
Well, I mean, I did A, like, I paid for it, and B, I don't like to disappoint people, and I like to show up to the things. So I would show up to our. Our training session. So, yeah, it was. But it all. It was all one package.
- [39:38]
B
Yeah.
- [39:39]
E
And. And also, if you pay for something, you should do your thing.
- [39:42]
C
And so.
- [39:44]
D
Yeah.
- [39:45]
B
Thanks. So about you, Hannah, what got you motivated?
- [39:48]
D
I'm gonna do it, you know, just seeing. Seeing some improvement. Like when I would do the squats and being able to explore and, like, just. That was something. And you're so encouraging. And I think what speaks volumes is when you have someone like Kathy that can speak your language gets it.
- [40:10]
B
I do think that's. That is.
- [40:12]
D
It moves mountains. So that was a big drive for me as well.
- [40:16]
A
Thank you.
- [40:17]
B
I. Thank you. I didn't mean that for. To be like my. But I think it is when people understand. I think you would agree, Dr. Katz, when people understand what you have, I think that's. If you have somebody coming that doesn't understand our world or it's. That's kind of can be frustrating when they don't numbers we have. So. But thank you for answering. I think it goes hand in hand. I think sometimes the eating can get very frustrating. So I think I always try to come up with, you know, just make sure that you're eating things. When there's a label that is so long so that you don't understand it probably not good for you. So, you know, just. I don't. I try to not give those kind of lessons that are. They're so difficult, especially with newly diagnosed, that here's your new list, here's your new life. Not only are you diagnosed, but you have to do this one's exercise. You have to change your entire diet. And so probably what you would do, right.
- [41:10]
C
I mean, I think that's. That's really important, particularly for people who are newly diagnosed, is just not to overwhelm people with how much their life is going to be different.
- [41:18]
B
Right.
- [41:19]
C
When I'm trying to tell them really how much your life is going to be the same, there are going to be some additions, it's not going to be exactly the same, but you got to focus on all the things that you're going to do, just like you did before. And, you know, so when people ask, well, what should I be eating? I want them to think, okay, look, let's. Let's get six months into this and then we can talk about the big lifestyle modifications and diet if we even need to do that, if, you know, you're not eating healthy. But it's, you know, it's a lot to process when you're first diagnosed.
- [41:49]
B
And it's very smart to not give them. Let them be diagnosed for a bit. Let them kind of get their.
- [41:54]
C
Yeah. Let the dust settle and.
- [41:56]
D
Yeah.
- [41:57]
C
Get back on your feet.
- [41:58]
B
Very smart. Are there any questions, Jacob and Hannah, that you have for Dr. Katz before we end today? You've got him right there.
- [42:06]
D
I know. I'm like, oh, my gosh. Well, I just, I think you've touched on it, like what you are excited about, like the btk, obviously with me with Primary Progressive. I did start back up on Ocrevus in December. I was off the whole time. I was declining and I kind of held off because I was trying to do some other things to maybe combat it in a way outside of medicine.
- [42:32]
A
But I got back on.
- [42:35]
D
But I sometimes. Well, I guess this is a question because I sometimes don't even know what to ask my neurologist when I go. I did ask about clinical trials when I met with my neurologist for the first time last year when I switched mandel centers. And she kind of just said it's not something that they really do. I mean it just. So I. Because I seen a few. But outside of that, it's kind of like. And I don't really know what to ask. And I've had some significant progression I've been experiencing in the last year, but more so since April. And it's, it's. It's been a lot. And so I'm going to speak to her in October and I'm like, I'm overwhelmed on like what to even ask. And there's times that they recommend PT and OT and I get that and I've done it. But I guess that's, that's a question of like, what. What are great things to ask and you think I'd be. I'd know by now. I've been in this since 2017, but I don't know.
- [43:41]
C
Well, I think that's, that's a hard question actually. Yeah, what you should ask. I mean, I think you can sort of break it down a little bit. Like, you know, first you have disease modifying therapy. Am I on the right one? Is there any new information about ocrevus and progressive ms? How long should I stay on treatment? And a lot of these things, the answers are, I don't know. I mean people ask all the time, am I getting the right dose of ocrevus? We don't know what the right dose of Ocrevus is. We know.
- [44:06]
D
Right.
- [44:07]
C
So, you know, you can focus on DMT questions, you can focus on symptom questions. So for whatever symptoms you have, you can make a list and say, you know, am I on the right treatment for this? Make, you know, go in with a list of symptoms that, that are bothering you and just, you know, am I on the optimal treatment for this? What should I be doing differently? And you know, and if there's time, what's, you know, when do I need another mri? It's an important question. And why, you know, not. Not just the answer, but why is that the answer? I like people to know, you know, you don't need an MRI this year. Let me tell you why I don't think you need an MRI this year. Or what do you do? Because otherwise you're just doing what somebody's telling you to do and not really understanding the rationale for it. And yeah, you know, not that everybody wants to know, but I think it's good to with like, okay, now I know what the plan is and why we're doing it.
- [45:04]
B
Yeah.
- [45:05]
C
So maybe direct your questions to answer those.
- [45:10]
B
Yeah, those are.
- [45:11]
D
That's excellent. I really appreciate that. Can I still have one more quick question?
- [45:15]
B
I'm sorry.
- [45:16]
C
I'll be here all night.
- [45:18]
D
And with primary Progressive I. My MRIs have been stable since 2017, and so I'm not surprised when they come out and I'm like, all right, cool. And obviously if it, if something did change, that that would concern me. But I was told, I was explaining that it operates on a micro level, and that's why we don't. You don't see them in the images, the changes. So I was just curious what your answer is to that.
- [45:45]
C
Yeah, well, it's funny because when I was doing these talks in Missouri, one of them is all about mri, and the main thing is, you know, why am I getting worse? But my MRI looks the same. And the MRI is not a perfect tool. I mean, we can see a lot with an mri, but there's a lot that we can't see with our standard MRIs. And in progressive forms of MS, it may be that we, we now are able to see certain things on specialized MRIs that do correlate with progressive Ms. So there are what are called slowly expanding lesions. If we look at the volume of a typical MRI lesion is called a T2 lesion. And if we look at the volume of a T2 lesion over time, they tend to get bigger. Not all of them, but some of them can grow. But it's very hard to see that on a standard scan. And it's hard to see that in a 6 month or even 12 month period of time. It's something that you can see more over a two to three year period of time. So it's like watching the hour hand of a clock. It doesn't look like it's changing, but if you look at it long enough, you can see that it does actually change. And these aren't things that you measure in a standard mri. So that's part of it. And the other part of it is that some of the lesions have inflammation at their edges that you can image in specialized ways but aren't available on today's routine scans. So edges of some Ms. Lesions, we can see that there are deposits of iron, and that is associated with activated microglia. Those are these inflammatory cells. And there are MRIs where we can look for these. They're called pearls, paramagnetic rim lesions. And this has become a big thing in Ms. Is to image these pearls, because we know that that does correlate with progressive Ms. So on today's MRIs, we don't see much that correlates with slowly progressive symptoms. But that may not be true for tomorrow's MRIs.
- [47:55]
B
So the specialized MRIs, are they available, like.
- [47:59]
C
Yes and no. Like, there are some radiologists know how to look for these pearls, but it's not a standardized thing, so it's okay. It's. I would say that these are still things that are a few years out from being standardized and being able to be measured in a reliable way. Okay, you know what? Here's the thing. It's not really that important to. To image that if you're getting worse, you're getting worse. That's what we need to know.
- [48:26]
D
Right.
- [48:26]
C
Seeing it or not seeing it doesn't change anything. It's really going to matter when we can image it. But you're not getting worse. And I see. Okay, well, you have the markers for progressive disease before you're progressing, and when we have something, we can do about it.
- [48:42]
B
Right, right.
- [48:43]
C
Right. Now, seeing it doesn't necessarily change what we're going to do for you.
- [48:47]
A
Right.
- [48:48]
C
When we, you know, if. That I could see in the future, though, we could do an MRI and say, oh, look, there are three of these paramagnetic rim lesions, these probes. You're doing well, and you're on, let's say Ocrevus. But this is a marker for chronic inflammation. Maybe we should switch you to a btk. Drug problems. That's what it's going to be. Useful.
- [49:10]
A
Yeah.
- [49:10]
B
Very interesting that you know that these drugs.
- [49:15]
A
Right. Yeah.
- [49:16]
B
But something exciting, finally, to look at. Very good, Jacob.
- [49:21]
A
Thank you.
- [49:22]
E
Yeah. I just have one question, which I feel like you may have indirectly answered earlier is like, so obviously the concept of remyelination, when do you think that, like. Because, like, there's a lot of talks about it and whatnot, but, like, it doesn't really seem like it's moving forward. Like, when do you think that, like, will Potentially be a thing. I think the thing that you answered indirectly earlier, which was like, figure out how to like stop the progression and then to bring it back. Is that, is that kind of in the same.
- [49:56]
C
Well, I mean, I think what we found about remyelination is that it's a very delicate process. It's a very complicated process, and it's easy to disrupt that process if there's ongoing inflammation and you don't have exactly the right environment to remyelinate. So I'm not sure that this is true, but my thought is that remyelination therapies will be more effective once we're able to shut down chronic inflammation. And there is another problem with remyelination therapies, which, you know, if you look at your average Ms. Lesion, you've lost a lot of nerve cells, not just myelin. So, you know, if you've lost 50% of nerve cells, you don't have as much to remyelinate. Now, that isn't to say that that won't be an effective strategy, both for restoring function and slowing progression, but I'm a little worried that people are thinking that remyelination therapy is going to be the difference between being in a wheelchair and walking again. And I don't think it's going to be that profound a difference.
- [50:55]
E
Okay, that makes sense. Like it seems, it seems like it's a very big beacon light that like, you know, but like, it's like, it's like. But getting from point A to point B seems very complicated.
- [51:07]
C
Yeah, I mean, it is a little bit like unscrambling an egg. It's. It's much, much harder to do.
- [51:13]
B
Yeah, that makes sense.
- [51:15]
E
That does make sense. Thank you for that.
- [51:17]
B
Yeah.
- [51:17]
E
And there's one more question, Dr. Katz. Do you have any patients who do cryotherapy for their Ms. Inflammation?
- [51:26]
C
Probably one or two who have done it. I, I am. Just so you know who you're dealing with here, there are people who are like open minded to alternative therapies and then there are skeptics. And I'm like off the screen. I tend to be very, very like. So red light therapy and cryotherapy, for every study that shows that they're effective, there are clinics opening up left and right that offer it for just about every treatment. And, you know, I'm not saying it doesn't work, but anything that costs money and doesn't show me a clinical trial that's a reasonably good clinical trial, I'm reluctant to advise my patients to do. And that's true for Supplements. And it's true for a lot of alternative therapies. I'm not against it. I just don't want to recommend it either. And I, And I'm also very sensitive to the fact that like, you know, the way I put that this often to my patients is like, you know, from this side of the desk, you know, the doctor side of the desk, I'm like, I'm very reluctant to put my patients in harm's way and have them be taken advantage of. And there are so many things out there that are just advertising to you and telling you this is a solution for this and that. I really feel very protective of my patients not getting caught up in that. But from the other side of the desk, if I'm not doing well and my doctor has offered me everything that he can and I'm still not doing well, and somebody says, well, you know what, try this and see if it works. Yeah, I'm probably going to try it. Like, you know, I, I totally get it. Like, I think that if it's not going to hurt me and I'm willing to take a chance on it, why wouldn't I try it? And you know what, Even if it's a placebo effect and I feel better, I feel better. So, you know, it's a. I'm sorry for the long winded answer there.
- [53:25]
B
No, no, I think it makes sense.
- [53:27]
E
I mean, so the reason I ask, I do cryotherapy once a week. It's. And it's in a machine that's like, the machine is not based on like the gas or, or whatnot, but it's based on like fans and they like. I do it once a week and I. While it doesn't like last for the entire week, it gives me like relief for days with. Because my legs are normally like really, really tight. And then after I do it, I feel better. But also because of ms, my body temperature is just up all the time. I think that really affects it more than anything. It just reduces that inflammation in my legs and in just my body temperature regulation. So.
- [54:04]
C
Well, I'll tell you, my one personal experience with something like that was that I have a friend who has a hot tub and a cold tub and you know, the cold tub, he had the water at 50 degrees.
- [54:16]
E
Yeah.
- [54:16]
C
And it's like a refrigerator on side. You got out of the hot tub and you immerse yourself in this 50 degree water.
- [54:22]
B
Yeah.
- [54:23]
C
And it was just, I mean, it's exactly what you would imagine. It's just like, just sort of everything Shrank up and just felt like painfully cold for about 10 seconds. And then you started to accommodate. Yeah, I got out like, right, get back in the hot tub. Everything's tingling and I'm like, oh, that was awful. It just.
- [54:41]
A
Yes, terrible.
- [54:42]
C
But an interesting thing was that there was also this weird endorphin release. I'm like, I think I want to do it again.
- [54:48]
B
Yeah, I know I did it in California. I did the same thing. I was like, this is horrible. I don't want to do it. But after I was like, wow, I feel great. Like it was the same. I was like, why are we doing this?
- [54:59]
C
Those endorphins are doing for you. You know, it could be all sorts of, you know, the, the effects of it could be more than just anti inflammatory. So it's interesting.
- [55:08]
B
Yeah, yeah.
- [55:09]
E
The. So the thing, like I've done a cold plunge before and it was awful because it was water. Whereas like the cryo machine, it's just. It's there and it's like it's dry. So it's like the fans and then it's off.
- [55:22]
C
Yeah.
- [55:22]
E
And I think that is light years better than. Because when you get into something that cold and there's water involved, you stay like it's. It's just a different kind of cold. And it was.
- [55:31]
C
Oh yeah.
- [55:32]
B
And I do that in the shower. I take it. I take my shower at the end, I make it very cold and then I. Maybe I just like punishment, I don't know. But I just makes me feel better to make it freezing. Then I get out.
- [55:43]
C
You know what? If I could live an extra 50 years by doing that, I still wouldn't do it.
- [55:50]
B
I understand my dad, my kids think it's crazy, but my biggest advice about.
- [55:55]
C
Any of the alternative therapies, just to say is I'm just fine to do them, but I don't look at them as something to do instead of the traditional therapies. But in addition to.
- [56:06]
B
I agree. Yeah, I agree. If it makes you feel better, I think it's really important. And there's a lot that I'm studying right now, which I'll talk to you about later, not tonight, because I think we've exhausted to do. But I do want to say thank you so much, so much for today. I really appreciate all that you've given us. And really we got to touch on so many things. And I really appreciate. And also Jacob and Hannah, thank you for being on with us. And Dr. Katz, I can't say that I won't be calling you for another podcast with some other things. But really I appreciate it and it was so good to meet you. I've heard so much about you. And finally I was like, you know what? I'm just going to call and see if he'll if he'll be on our podcast. So thank you so much.
- [56:47]
C
My pleasure. It was nice to meet all of you and I would look forward to doing it again.
- [56:51]
B
Thank you so much. Will you enjoy your day and thank you. And I will let you know when this airs. I will. When Jacob tells me. And you guys have a great night. And again, thank you guys for listening to another episode of Move it or Lose It. And we will see you guys next week. So enjoy your night and goodbye.
- [57:09]
C
Bye, everybody.
- [57:11]
B
Bye, guys.
- [57:11]
A
Thank you.
- [57:12]
B
Thank you so much for joining me for another episode of the Move it or Lose it podcast. It would mean the world world to me if you subscribed and left a review. Remember, you can find me on Apple, Spotify, Stitcher, and YouTube. New episodes of the Move it or Lose it podcast air every other Wednesday. If you have any suggestions for future guests or topics, please visit my website@www.msdisrupted.com.
- [57:44]
A
Until next time.