Move It or Lose It | Episode 137 Part 1 | Dr. Joshua Katz: Helping disrupt ideas about MS treatment

Summary

Move It or Lose It Podcast | Episode 137, Part 1

Guest: Dr. Joshua Katz
Host: Kathy Chester
Air Date: September 10, 2025
Theme: Disrupting Ideas About MS Treatment & Up-Close on HSCT Experiences

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Episode Overview

This episode dives deep into innovative avenues for treating Multiple Sclerosis (MS), focusing on Hematopoietic Stem Cell Transplant (HSCT), new clinical drug trials, and the realities patients face navigating progressive forms of MS. Host Kathy Chester welcomes Dr. Joshua Katz, Director of the Elliot Lewis Center for MS, and guests Hannah and Jacob—both HSCT recipients—for an honest, practical, and science-driven discussion. The episode frames pressing questions: how are new therapies changing the MS landscape? Where does HSCT fit today? What are the complexities and lived realities behind these major medical decisions?

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Key Discussion Points & Insights

1. Dr. Joshua Katz—Background and Current Research

• MS and Related Conditions: Dr. Katz's clinic primarily manages MS and related autoimmune demyelinating diseases like neuromyelitis optica and MOGAD.
• Practice and Patient Load: Dr. Katz estimates his and Dr. Bouley's practice serves upwards of 2,500 MS patients, blending hands-on clinical care with active clinical trials.
  “We work almost exclusively with ms, although I'll include neuromyelitis, optica, mug...and we also have clinical trials.” (01:56)

Cutting-edge Clinical Trials (02:00–03:33)

• Independent Research:
  • Long-term safety trials of anti B-cell therapy.
  • Experiments with steroid-free infusion regimens.
• Industry Trials:
  • Fraxalumab: Phase 3 trials for both non-active secondary progressive MS (placebo comparison) and relapsing MS.
  • Fenebrutinib (a BTK inhibitor): Compared against Ocrelizumab, showing promise in potentially treating progressive MS.
  • “One of these drugs might even become available at the end of the month.” (03:27)

Progressive MS: What Works?

• Progress in one progressive MS subtype (primary or secondary) often translates to the other. However, insurance coverage doesn’t always follow scientific logic.
  • “If it works for primary progressive ms, it should work for secondary progressive Ms. Because...those two things look exactly the same in terms of the biology.” (03:42)

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2. HSCT—Promise, Complications, and Patient Testimony (06:01–29:30)

What Is HSCT? (07:24–09:06)

• HSCT isn’t a single treatment:
  • Non-myeloablative: Uses milder chemotherapy; fewer complications, but potentially less effective.
  • Myeloablative: Stronger chemo, deeper immune reset; higher risk but sometimes better efficacy.
• Comparisons with current therapies suggest stem cell therapy’s relative benefit is narrowing as “standard” options improve.
• FDA Status: Not an approved MS treatment; access requires a clinical trial or out-of-country, out-of-pocket care.

Real-World HSCT Experiences

Hannah’s Story (10:06–20:53)

• Background: Diagnosed with primary progressive MS in 2017; progression prompted search for alternatives.
• Route to HSCT: Chose Clinica Ruiz (Monterrey, Mexico) during COVID era in 2020, attracted by reported 75% success (halted progression) for PPMS and strong peer/patient reviews.
• Pre-transplant Status: EDSS 3.5, foot drop, tingling, bladder issues, no major mobility aids pre-treatment.
• Complications:
  • Became severely anemic (required two blood transfusions).
  • Suffered acute loss of vision—“blew both retinas”—but vision eventually recovered.
  • “I had a really bad headache and fever...I woke up and I had gray spots...turned out that I had blown both my retinas.” (17:22, Hannah)
• Post-HSCT Course: No immediate disease reversal; ultimately, progression accelerated. Five years later: EDSS 6.5, bilateral leg issues, increased reliance on rollator and scooter.
  • “Unfortunately it didn’t work because I’ve significantly progressed...” (18:56, Hannah)
  • “If I hadn’t got the treatment, who’s to say [if I] wouldn’t have progressed that way? I don’t quite know.” (20:53)
• Reflections: Despite lack of benefit, Hannah stands by her decision (“the right decision at the time”), underscores nuanced risk/benefit discussion for PPMS patients, and discusses how data for HSCT is less solid for progressive vs. relapsing forms of MS.

Dr. Katz’s Reflections on HSCT (23:05–32:20)

• High bar for HSCT “success”—complete halting of progression—is rarely achieved in progressive MS.
  • “The bar that they set for success...is an extremely high bar. We don’t really even have that bar when we put people on okrealismat.” (23:05, Dr. Katz)
• Efficacy appears higher for relapsing forms.
• Many patients, even after “failing” current treatments, reasonably consider HSCT. But Dr. Katz urges critical review—Clinica Ruiz’s results appear unusually optimistic compared to more rigorous trial data (e.g., Richard Burt’s research).
  • “The numbers that they quote [at Clinica Ruiz] are sort of unusually high and better than what you’re seeing with some of the more rigorous trials.” (27:46)
• Financial & logistical caveats: cost, choice of international clinics, necessity of good patient care.
  • “You’re...on your own dime. I mean, you got to pay for this. And so, you know, it’s a big ask...” (28:56)
• Advice: Always discuss HSCT with an MS specialist with research familiarity and a head for the latest statistics/regimens.

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3. MS Progression, Candidacy for HSCT, and Pathophysiology (29:30–32:20)

• Length of diagnosis often correlates more with inflammation type (acute vs. chronic) than time per se.
  • _“It’s not necessarily how long you’ve had MS, but...with time, you’re going to have fewer relapses with time and fewer new MRI lesions...the longer you’ve had ms, the less frequent those things become. (30:19, Dr. Katz)
• HSCT is most effective for those earlier in the disease course and with active inflammation.
• Blurring the lines: modern research questions if primary and secondary progressive forms of MS are truly distinct or points on a spectrum—a shift in thinking that may impact future therapeutic choices.
  • “Maybe not even the difference between progressive forms and relapsing forms of Ms. It’s just a matter of what form of inflammation predominates.” (31:31)

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Notable Quotes & Memorable Moments

• On trial progress:
  “These drugs are getting a lot of attention now because they look like they have the potential to treat progressive forms of Ms.”
  —Dr. Katz (02:20)

• On HSCT’s limits:
  “Our high [efficacy] treatments keep getting a little bit better, almost in line with HSCT.”
  —Dr. Katz (09:03)

• On the ambiguity of outcome:
  “You really never know when you’ve accomplished that goal because we don’t know the counterfactual of what would have happened...It could have been the same, could have been better, could have been worse.”
  —Dr. Katz (23:36)

• Raw patient perspective:
  “I knew it was the right decision for me at that time. I wanted to do something to see if it worked.”
  —Hannah (21:20)

• Practical advice:
  “My advice for anybody thinking about HSCT is make sure you’re seeing an MS specialist and ask them what they think.”
  —Dr. Katz (29:30)

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Timestamps for Key Segments

• MS Clinical Trials & Innovations: [01:56] – [05:58]
• What Is HSCT?: [07:24] – [09:06]
• HSCT as a Patient Decision: [09:27] – [10:06]
• Hannah’s HSCT Experience & Complications: [10:06] – [20:53]
• Medical Commentary on HSCT Outcomes (Dr. Katz): [23:05] – [27:46]
• Advice for HSCT Seekers: [29:30] – [29:52]
• Progression & Disease Mechanisms: [30:19] – [31:57]

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Tone & Flow

The episode balances hope, realism, and front-line patient experience. Dr. Katz’s approach is scientific but empathetic, acknowledging uncertainty and hard choices. Hannah’s testimony is open-hearted and present-tense, showing what it’s like to navigate treatment possibility, risk, and the evolving reality of living with progressive MS.

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Conclusion & What’s Next

The episode wraps as a “part one,” promising that Jacob will share his HSCT journey in the next installment, and Dr. Katz will field more audience and host questions about where treatment could and should go next.

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For listeners: This episode is an indispensable primer on the challenges, innovations, and tough decisions facing today’s MS community—grounded in both cutting-edge science and lived patient stories.

Transcript

[A]

Foreign.

[B]

Your host, Kathy Chester. And welcome to the Move it or Lose it podcast, a podcast about all things that move the mind, body and soul. The Move it or Lose it podcast is for information, awareness, and inspirational purposes only.

[C]

I am not a doctor and I.

[B]

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 the views of the Move it or Lose it podcast.

[A]

Okay.

[C]

Welcome to another edition of Move it or Lose It. And today we are very excited. We got a little panel going on, so I'm very happy. I got Dr. Joshua Katz, who I've been waiting, very excited to have on. We're going to talk about several things. And Dr. Katz, thank you so much for being on Move it or Lose it today.

[D]

My pleasure. Thanks for having me.

[C]

Absolutely. And we've got Hannah and Josh or Jacob with us today and we're also going to discuss HSCT and some other things. So first off, Dr. Katz, if for anybody who doesn't know you, I'm not sure who doesn't, who does not know you in the Ms. Community, but you are the director of the Elliot Lewis center for Multiple Sclerosis and you've got a huge. So much that I couldn't even read and catch up on. But we just started talking. I was like, we've got to start, we got to start doing this now because you've got so much to say and very exciting stuff, lots of trials and stuff, and very excited to have you on. So you are now working, you've got some, some things that are, you're, you're doing now, some clinical trials and you're working primarily with Ms. Right now and have been. So talk to us about what you're doing right now or whatever you really, whatever you want to share because you had so much that was very interesting.

[D]

Yeah. So we work almost exclusively with ms, although I'll include neuromyelitis, optica, mug, you know, the other demyelinating diseases also. So, you know, most of my time is spent in clinical practice. We've got something like 200, 220, 500 patients between myself and Dr. Bouley, but we also have clinical trials that we're doing. So we do a combination of independent research. We're doing a long term safety trial in patients who are on anti B cell therapy. We're looking at different infusion regimens, we're looking at trying to eliminate steroids prior to giving anti B cell therapy. Some people have side effects to it. And so far it looks like people seem to tolerate doing that without steroids under certain conditions. And we have also industry sponsored clinical trials. And the two that are, I think the most interesting right now is there's a trial for a drug called Fraxalumab. We're involved, there are two phase 3 clinical trials for that drug. We're involved in the one that's comparing it to placebo in non active secondary progressive Ms. There's also a trial for fraxalimab for relapsing Ms. And we're involved in a clinical trial for one of the BTK inhibitor drugs. These drugs are getting a lot of attention now because they look like they have the potential to treat progressive forms of Ms. And we're in a trial of fenobrutinib comparing it to ocrelizumab.

[C]

Okay.

[D]

These, one of these drugs might even become available at the end of the month. And so very excited about these drugs.

[C]

Yeah, that sounds. So this will be able to. One of them will be able to help with primary progressive and all that as well.

[D]

Hopefully any of the drugs that work for any form of progressive Ms. You know, if it works for primary progressive ms, it should work for secondary progressive Ms. Because really if you look under the hood, those two things look exactly the same in terms of the biology of what's happening now. It doesn't mean that insurance will cover it. If they do a trial for primary progressive ms, they might not cover it for secondary progressive Ms. You know, it could be.

[C]

Well, we love insurance. Insurance is our favorite.

[A]

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[C]

So those are two of the biggest trials that you're working on right now?

[D]

Yeah, I think those are the ones that are, I think, the most promising and interesting.

[C]

Okay, very. Yeah, very interesting. It's always interesting what's happening in the Ms. World that we don't know always as patients. So to have you on is, is exciting to hear. So I know you were at the men's group. You were speaking at the men's group now two weeks ago, three weeks ago.

[D]

Well, that was not just the men's group, but Matt Price and his wife Rebecca put on a whole educational program down in Branson for a couple of days. So I got to speak down there for a couple of days.

[C]

Yeah, yeah, they. I know a lot of people that were there, so that was really neat to know that you were there with them. So very exciting. So we wanted to go over several things, of course, and we have Jacob and Hannah because they both had hsct. And so one of the things that I wanted to talk with you as well is kind of the benefits and kind of the things that don't always go great with hsct. Kind of where we are as an Ms. Group as far as. Where are we as far as pushing this more and where we as thinking maybe this isn't the best thing. Maybe this is getting. Maybe people are Ms. Patients are getting more of HSCT or less and just kind of wanting your opinion as, as far as hsct. And then I want to hear a little bit from Jacob and Hannah as far as their experience was with it.

[D]

Sure. Well, you know, I want to start out by saying that when we talk about hsct, it isn't just one thing. It's really a bunch of different things that all go under the same heading. So there's a non myeloablative form of HSCT where you using relatively weaker forms of chemotherapy and then there's the myeloablative form of HSCT where you're using much more toxic medication and getting a much more deep suppression of bone marrow. And we found, you know, if you look at the trials, the myeloablative stem cell therapy is both riskier and, you know, has much more complications with it, but also has better results. And this isn't a surprise because the deeper you suppress somebody's bone marrow, you would expect that to have a better impact on an autoimmune disease. And then the non myeloablative form of hsct, depending on where it's done, they use different regimens. And so it's really hard to compare all of these things when you're looking at efficacy. There was a recent paper that was published that looked at the. They compared HSCT to some of the higher efficacy treatments, and they found that it looked like it might have been a little bit better at suppressing relapses, but basically only with Tysabri, it looked better. It really wasn't better than ocrelizumab. It was better than Olimod. But, you know, one of the things that I've seen with HSCT is that as it's gotten better and safer, our treatments have sort of kept pace with it so that our high treatments keep getting a little bit better, almost in line with hsct.

[C]

Okay.

[D]

So another thing about HSCT is it's not an FDA approved treatment, still in trials. And so there are a number of trials that are going on, comparing it to high efficacy treatment, but you can't just go out and get it. Unless you either want to go to another country and pay out of pocket or you get into a clinical trial.

[C]

Yeah, I think that that is something really important, is that right now Mexico, obviously is a big area that a lot of patients go. And so you've. Jacob, you went to Mexico, correct?

[D]

Correct. Yeah. Clinica.

[A]

Okay.

[C]

And then, Hannah, you as well.

[A]

I did. Okay.

[D]

And then Clinica Ruiz graduates.

[A]

Yes.

[E]

Yeah, I was in Monterey.

[D]

And I was in Puebla, specifically.

[C]

Gotcha. Yeah.

[D]

I didn't even know they had two different locations.

[A]

Do you guys.

[C]

Hannah, do you want to share a little about your story with hsct? Sure.

[E]

Yeah. So I'm Hannah Butler, and I am down the road from you, Dr. Katz.

[C]

I was gonna say in East Lawn.

[E]

Meadow, just outside of Springfield.

[D]

Okay.

[B]

Yeah.

[D]

So now are you going to UMass for your care?

[E]

I'm going to the Mandel center in Springfield. I was in Hartford, but they opened it, you know, 10, 15 minutes away. So that's where I am for now.

[D]

So just a quick nod to if you ever saw Peter Wade, was.

[E]

He happened to Be he wasn't. But I knew how beloved and you know, what a wonderful man he was.

[D]

And doctor, a friend and colleague and very sorry to lose him a couple of years ago. Sorry.

[A]

Yeah.

[D]

For the aside there.

[E]

Oh, that's okay. Not at all. So I was diagnosed with primary progressive Ms. In 2017 and I actually didn't know what type of Ms. I had. I kind of assumed it was the other. I didn't even know there was a primary progressive. So I switched from that practice to another one where I got more. A lot more insight. But with that, you know, symptoms were a little mild at first and then kind of continued on into where I left work. And then I did start ocrevus as well. And then right around the time it was the fall of 2019 and then heading into 2020, I kind of felt like it was my right leg was dragging a little bit more. And I reached out to my. My neurologist just saying, you know, is there. Is it worth exploring something else? And she had said, well, I had only had one dose and she had said, maybe let's give it another and we can talk about it. So with that though, I did come across hset. My sister did actually. And we started to do a lot of research and I looked into Clinica Ruiz, by the way. It was Covid at the time, so that we had to take into a lot of factors. And Russia was closed. They weren't accepting anyone coming in. So I did some research. I spoke with a few folks that had the treatment down there. And the only person I spoke with that had PMS or has it, she was in Russia. And I don't know if she was. I think it's non myoblative. But anyway, I just wanted to get her take. She did very well on it. She had a rough 14 months recovering, but overall there was no relapse. She has, since I think it was last year, relapsed and she went for it again. So we'll see how it goes. But anyway, chose clinical re. There are two locations Monterrey has where you. You cook your own food and I believe Puebla, it's more. You can have the food that they provide. There's like, I think a cafeteria. I'm not sure you can talk to that, Jacob, but I liked the thought of cooking my own food. So I signed up and I went down in the fall of 2020. So my treatment started in October and my actual stem cell birthday, as they call it, was November 13th, I will say the the clinic of Rheaves. It's like the best care I've ever had, from an attention to detail from the minute you get out of the airport to when you leave to go back into the airport. I mean, just very attentive. Yes, it. I was blown away. Phenomenal facilities, just the patient care. And even you had a person you could call 247 while you were at your apartment. And it just. I was just really, like I said, just really floored by it and appreciated that, because, you know, I've never flown out of the country to get treatment. I never even really had a major treatment. And by the way, it's during COVID so there's a lot of factors. So, um. But. So I will say that was a huge positive and a big reason also, I decided to pursue. This is some of the. The statistics that they provided was there was a 75% success rate for PMS. You know, again, let's see. I don't want to discredit it, but you just. Maybe not. Not sure. But talking with my neurologist, she was very supportive. You know, the medicine I was on had a lower rate of success with BPMs. So at the time, it was the decision I wanted to make. I really wanted to see if this could help me, because I could tell things were shifting. And at that time, I was 39, and I had two kids, one starting kindergarten and first grade. So, you know, I'm looking ahead, and I just really wanted to try something, and so I was accepted.

[D]

Can I interrupt you for one second, because I have a question. When they say 75% success, what does success mean for them?

[E]

What I believe, and this is a ways back, is that it halts progression.

[D]

Okay. All right. And can I ask also, what did you look like going in when you. What. What were you saying?

[E]

Yeah, I was. So I was a 3.5 EDSS on the disability score. For anyone listening, not sure. So I went in with foot drop, and I had. So when I think of it, I always kind of measure it by mobility. Today I don't. But back then, it was a foot drop, and I was noticing it was increasing. So took a video of myself walking at Dallas Airport, and I was walking without. I didn't have a mobility aid, just an afo. And I did have some other symptoms. Tingling, you know, some bladder stuff, you know, those things. But going into it, that's how I. That was my disability score. So early on, you know, with all the medications that you start to get and then the chemo, I quickly became deconditioned. I was just so tired and I started to notice, you know, I was getting weaker, so I needed to use a Rollator. And I was like, oh, it's only going to be, you know, a quick thing. I did fairly well with the chemo, and it's non myoblative, so it didn't bother me too much. I think I had a slight headache one day, so I was really pleased with that. Unfortunately, what happened was after the STEM cell transplant, November 13, I became severely anemic and I needed two blood transfusions. And that is that. That I can say will be more common, I guess, for a complication. But then shortly after that, I actually, right before the blood transfusions, what led me to the hospital was I. I had a really tough. I had a really bad headache and fever, and overnight it did break. I was taking medicine and I woke up and I had gray spots when I look. When I. When I would look and see. And it turned out that I had blown both my retinas.

[D]

Oof. That's an odd complication.

[E]

It is very odd. It was the first. And of course I'm like, that's me. I'm your first.

[D]

And what does that mean? You had retinal detachment or not? I should say.

[E]

I wouldn't. It was whatever it was that I had. I had gray spots hindering. And it did. They did correct themselves over time, I would say one. One was maybe a month, the other might have been like a month and a half. They got me right into an ophthalmologist again, right in with one of the city's top. The facility was like futuristic. So again, I was really impressed by that. But, you know, in thinking about joining this, talking about complications and coming onto the podcast, I don't. I didn't really ask why it happened. I don't know what if I did or not. I just wanted to get healed and get home. So I.

[D]

Don't you ever find out what happened?

[E]

I didn't. I don't. And I don't know if it was because they'd never had it happen. So it is a question like, hey, following up. I just didn't.

[D]

They were not able to diagnose you?

[E]

No, no. But all I know is the night that I had the fever and the headache, I woke up and I was like, I'm. I'm seeing gray spots. And they were very concerned with that. And then I also. I think actually the blood transfusions were before. I'm sorry, I'm just. Those were my two main. Those were the two complications that I had and obviously the retina was pretty significant.

[A]

Yeah.

[E]

So I had to stay an extra week down there. So I was there a total of five weeks. Typically it's four. We were able to fly back and then just came, you know, getting back in to my home. And it's now getting close to reentering Christmas season. So I was told from one of the people I spoke with to take the first month just to rest, but start to do some movement after a month. And I had a home PT calm. And at that time I was walking still. I didn't have the rollator the whole time because I had regained some energy. But I still needed the afo. I still had the foot drop and I understood that those things weren't going to magically go away. So that was around the beginning of 2021 into the spring. But fast forward five years later. Unfortunately it didn't work because I've significantly progressed. I'm at a 6.5 EDSS. I do require my left leg joined the party as I like to say. I think the fall of 2022, I started to notice same symptoms I had way back in 2016. So as of now, I use a Rollator. I was using walking sticks. I can no longer, when I go out and about, I use a scooter. Now I don't, I rarely use my Rollator because my walking has just been just considerably that it's been impacted. So, you know, if I hadn't got the treatment, who's to say wouldn't have progressed that way? I don't quite know. I have heard I listened to a different podcast with a doctor that was performing it and mentioned that there's something about the fever and the fever can disrupt something with the neurons and kind of accelerate. Maybe that's what happened. I don't know.

[D]

It's a little odd to me because fever is such a common complication of stem cell transplantation across the board. I mean, you know, that's. That is the major complication that you reason that you stay under observation is that during the period of time you have a weakened immune system, it's pretty common to see people even you know, at least a low grade fever or have infections. So if that's the problem, it's going to be a problem with stem cell transplantation in general.

[E]

Right. And I'm glad you said that because you know, when you listen to different views and researchers, you just, you're not sure. But I just, I look at it and I knew it was the right decision for me at that time. I wanted to do something to see if it worked. My neurologist was on board so I don't regret it but it is hard to wonder things progress as quickly but also Everybody is different. PMS, that's that kind of that, that 10% of the group, you know.

[A]

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[D]

So you know, you know what I'm thinking is this, this really reminds me of a conversation that I'm having with another one of my younger patients with primary progressive Ms. When you mentioned not regretting having gotten it. I'm glad to hear that because I think it's so easy to second guess your decisions when you don't do well. And first of all, the bar that they set for success which is to stop progression, is an extremely high bar. We don't really even have that bar when we put people on okrealism at Vocalism have. Our goal is perhaps to slow progression. It's not impossible to stop it, but we really are trying to slow it down. And the other thing which you touched on is you really never know when you've accomplished that goal because we don't know the counterfactual of what would have happened to you had you not gotten the treatment. I mean, it could have been the same, could have been better, could have been worse. We don't know. But you know, my guess would be that the treatment did something. But the bigger problem right now is that we really don't have any reliably effective treatments for progressive forms of Ms. And this unfortunately has been, has been proven to be true mostly for stem cell therapy as well. It is very effective or can be very effective for relapsing forms of ms, but the statistics are not nearly as good for progressive Ms. My three patients who went and got stem cell therapy, well, there was a fourth. Three of them had progressive forms of Ms. And I don't think it worked really in any of them to substantially slow their progression. Very hard to know. But, you know, it just doesn't make a big difference for most patients. But was it wrong to try it? No. I mean, you may have accomplished something by doing that.

[E]

Yeah. And that's. It's a good angle to look at it. And again, you know, it was the best decision. It was the right decision, I should say at the time. And obviously, you know, to hear the information you're providing, I might have liked to hear some of that. But, you know, what I was hearing was a 75% and my neurologist didn't know too much about it. And that's okay. I mean, they may not. I was her first patient to have it. So, you know, I don't think, you know, she didn't have the clinical information and maybe if there was some more, she would have, but I don't know that it would have changed. I don't know. And so I did go and, you.

[D]

Know, I think it's again, not very hard to second guess. So the reason I said this reminded me of a patient is I have a patient who decided to go into a clinical trial because they were not doing well on one of the anti B cell therapies. She's in the clinical trial for Fraxalimab. I don't know if she's getting placebo or not, but not doing well. And then really second guessing the decision to stop B cell therapy. And I'm reminding her we did this because you weren't doing well. We didn't really have any other good options. But when you're not doing well, it always feels like every choice you've made was the wrong.

[C]

Yeah, I'm very true that's.

[D]

And it's, it isn't. It's just. It leads you to second.

[A]

Yeah, right, right.

[C]

I do. When it comes to like how Hannah's feeling now and how she is feeling like ash, I'm just declining, declining, declining. Do you see that? Jacob and I talked about this earlier and I'm not speaking for you, Jacob, because I'm asking my own. They're not saying this was your question. Do you ever see patients that have had HSCT go back and get like another boost of like chemotherapy or anything like that to help?

[D]

I have not as of yet.

[C]

Okay. And I wondered if that was something.

[D]

That they do that I'm a little bit cautious about. And first of all, we really don't have the data, comparative data with HSCT at least in big clinical trials, to compare it to standard therapy. But we know for a lot of people, the standard therapy isn't working. And I think under those circumstances, it absolutely makes sense. If somebody can offer you, you know, like, credible statistics that something works, it's absolutely reasonable to try it. I mean, you know, I think about this all the time. If it were me, that's probably what I would do. If I weren't, you know, if I wasn't doing well and somebody said, look, this is as aggressive as you can be, and the statistics show some chance of it working. Absolutely makes sense. One caveat with that, somewhat specific to Clinica Ruiz, is that the numbers that they quote are sort of unusually high and better than what you're seeing with some of the more rigorous trials that have been done. So Richard Burt, who is probably one of the leading researchers in hsct, as you know, more. I think numbers at least has published more numbers, and the statistics are pretty good in relapsing ms, but they're not Clinica Ruiz. Good. So it makes me question that a little bit. And, you know, you talk about how good your experience was going down there, and if it wasn't good, people wouldn't go there, right?

[E]

Absolutely.

[D]

I'm not gonna go to another country and have somebody come back and say, well, you know, it was a little bit. It didn't look like it was. It was nice, you know, but. But a little bit sketchy in places. Right into that program. Right. They've got to, they've got to make sure that it is top notch or people aren't going to go. And then the last issue is that you, it's on your own dime. I mean, you got to pay for this. And so, you know, it's a, it's a big ask, I think, to go down there with, you know, so it's, I'm a little bit cautious about having people do it.

[A]

Yeah, sure.

[D]

I think, you know, knowing now what I know, it's a little bit different if you go back five or ten years, honestly.

[A]

Go ahead.

[E]

Oh, I was just gonna say I'm on a group for primary progressive on Facebook and someone asked the question about hsct, and I don't, I never jump on and say, don't do it. I just, I've given my, my feedback in that, you know, for me, doesn't seem to have taken. But, you know, if it's something. But I do say it was the right decision at that time and they always appreciate it. So.

[D]

Well, my advice for anybody thinking about hsct is make sure you're seeing an Ms. Specialist and ask them what they think. That's the answer. You know, make sure you're having an in depth conversation with the doctor who can look at the statistics and evaluate the regimen that they're given that you would be given and, and go from there.

[C]

Yeah. Do you, do you know, Because I've heard all around, like, because I'm 20 something years in now. Great. I haven't jumped into primary progressive or anything like that. I do see a big decline after Ty Sabri and things like that. But do you think that they. Because I've often been told like, not you're, you've been, you've had Ms. For too long, you wouldn't be a candidate. Do you agree with that or do you think that that is.

[D]

Well, I, I don't think it's necessarily how long you've had MS, but since most people who've had Ms. For 15 to 20 years, the natural history of Ms. Is that you're going to have fewer relapses with time and fewer new MRI lesions with time. And we call that relapsing Ms. Yeah. So the longer you've had ms, the less frequent those things become. And if we know that HSCT is mostly effective at stopping relapses and stopping new MRI lesions and those things get better on their own anyway, there is a point where it probably doesn't make sense to do a very aggressive treatment with diminishing returns.

[C]

Sure, that makes sense.

[E]

My Ms.

[C]

Doesn't like me. If I'm off something, it's like zap, gotcha. So I don't know, it doesn't like me. But interesting.

[D]

It is a problem for people who have had Ms. For a long period, you know, for 20 plus years.

[C]

Yeah.

[D]

We know that over time there's a kind of inflammation that is inside the central nervous system that's hard for our current medications to get.

[A]

Yeah.

[D]

We think that that drives progression and. Okay, now were thinking that there really isn't a difference between primary and secondary.

[C]

Interesting.

[D]

And maybe not even the difference between progressive forms and relapsing forms of Ms. It's just a matter of what form of inflammation predominates. And early in the course of Ms. There's much more acute inflammation. And our current medications work really well for that. There is some of this chronic compartmentalized inflammation even early in Ms.

[C]

Okay.

[D]

Looks like if you treat Ms. Very aggressively early on, we might be able to sort of put a damper on that.

[C]

Right now you sound exactly like My. The one that I told you that I love so much. Every time you're talking, I'm like, you sound like you guys could have been best friends.

[D]

Who is that?

[C]

Dr. Howard Rossman, I think.

[D]

I don't think I know Howard Rossman.

[C]

But, yeah, he passed away about now. It's been 10 years. He passed away 10 years. I'm in Michigan. He was in. On Bloomfield Hills.

[D]

I probably didn't cross paths.

[C]

Yeah, I know. He traveled everywhere. He was all over the place, but. But yeah, you sound very much like him. He wanted to go big guns. You know, it is. He was big guns. No little stuff, so. And I very much appreciated that having two little ones at the time. Okay, so I would love. Dr. Katz, if you don't mind. I would love to have you with part two. I'd love to have Jacob tell his story. And there's still questions that I have for you. About a million. No, I'm just kidding. I won't keep you that long. But I would love to have you on and talk about Jacob's experience. Also, some of the questions that I would like to ask you.

[D]

So if you don't mind to hear about your experience. No, that's.

[A]

Thank you.

[C]

Okay.

[D]

As long as.

[A]

Yes.

[C]

Well, yeah, if he starts barking, Sophia will be jumping up just right along, so. Oh, well, hello.

[A]

Welcome.

[C]

We'll stay for part two. Thank you so much for joining me.

[B]

For another episode of the Move it or Lose it podcast. It would mean the world to me if you subscribed and left a review. Remember, you can find me on Apple.

[A]

Spotify, Stitcher, and YouTube.

[B]

New episodes of the Move it or.

[C]

Lose it podcast air every other Wednesday. If you have any suggestions for future guests or topics, please visit my [e-mail].

[A]

Until next time.

[E]

Next.