Move It or Lose It | Episode 137 Part 2

Guest: Dr. Joshua Katz
Host: Kathy Chester
Guests Sharing Patient Perspectives: Jacob Kinch, Hannah Butler
Date: September 18, 2025

Overview

In this episode, host Kathy Chester continues her deep dive into emerging treatments and real-life experiences in Multiple Sclerosis (MS), focusing on interpretive discussions with Dr. Joshua Katz and patient Jacob Kinch's journey through various MS treatments, including HSCT (hematopoietic stem cell transplantation). The episode highlights realities of navigating MS therapies, clinical uncertainties, considerations around progressive disease, and the need for individualized care approaches, with an emphasis on new frontiers in MS research and holistic well-being.

Key Discussion Points & Insights

1. Jacob’s MS Diagnosis & Early Treatment Journey

(01:56 - 12:07)

• Jacob was diagnosed with relapsing-remitting MS in early 2018.
• Initial treatment started with Copaxone due to medication contraindications, then transitioned to Gilenya (which aggravated his health with severe GI side effects and dramatic weight loss).
• A spinal tap was performed to “determine the type” of MS, leading to an unpleasant dural leak and severe headaches; both Jacob and the panel discuss the risks and dubious value of routine spinal taps for MS subtyping.

"You can't diagnose what kind of MS somebody has by looking at their spinal fluid. ...The only way to do it, really, it's a clinical diagnosis."
— Dr. Katz, (03:14)

• The panel underscores variability in neurologist practices and evolving standards for MS diagnosis.

2. HSCT Experience: Decision & Outcomes

(09:55 - 15:43)

• Jacob described deteriorating function, prompting a move closer to family and consideration of HSCT via Clinica Ruiz.
• Delay due to COVID, but ultimately had the procedure with good initial results: cessation of disease progression, increased mobility, resumption of work.
• After two years, Jacob’s condition worsened following a bout of COVID, with new spinal symptoms and MRI changes.

"After I got done with my stem cell transplant and everything, I came back, I was doing great. … I was starting to walk without my cane ... I even got like. I work in the audio industry..."
— Jacob, (12:07)

• Jacob reiterates: even in retrospect, he would choose HSCT again if given the option.

"I would still do it again 100%... If I would do it again in a heartbeat."
— Jacob, (15:47)

3. The Uncertainties of Disease Progression and Long-Term HSCT Efficacy

(13:21 - 16:13)

• Dr. Katz explains while HSCT, Lemtrada, Mavenclad, and certain other agents can offer extended remission, it is uncertain how long this effect lasts and whether “cure” is possible.
• MS monitoring and re-treatment approaches remain guesswork without precise biomarkers.

"The question is... have you cured MS or not? ...How do you keep monitoring? ...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..."
— Dr. Katz, (14:04)

4. Navigating Therapy Risks: Special Considerations (Liver, Hepatitis B)

(16:13 - 20:23)

• Jacob cannot take certain MS therapies (like Ocrevus) due to being a hepatitis B carrier; he details his experience balancing this with physicians.
• Dr. Katz discusses strategies: consulting infectious disease specialists, using antivirals like tenofovir to reduce reactivation risk if immunosuppressive treatments are essential.

5. New & Future MS Treatments

(20:23 - 26:08)

• Positive outlook on emerging BTK inhibitor drugs (e.g. tolebrutinib), potentially impacting progressive MS through effects on microglia—a central nervous system immune cell.

"We're hopeful that if we have drugs that can penetrate the central nervous system ... we think that they may have a significant impact on progressive disease. ...this could be the next big step forward."
— Dr. Katz, (21:10)

• Dr. Katz is cautiously optimistic with BTK inhibitors possibly gaining FDA approval soon.

6. Decision-Making, Regret, and Community

(21:30 - 24:07)

• Panelists discuss emotional ramifications: making tough treatment decisions, not succumbing to regret, and focusing on informed choices moving forward.
• Acknowledgment of high rates of depression in the MS population and importance of supportive care.

"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."
— Kathy, (24:07)

Notable Quotes & Memorable Moments

• On Spinal Taps in MS Diagnosis
  "You can't even really do it by looking at an MRI. The only way to do it, really, it's a clinical diagnosis..."
  — Dr. Katz, (03:14)
• On HSCT and Disease Monitoring
  "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..."
  — Dr. Katz, (14:04)
• On Choosing the Best Path
  "You did what you felt was right and who knows what it would have been if you didn't or did."
  — Kathy, (01:15)
• On Keeping Perspective
  "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. ...The best thing that people can do is going forward, make good decisions."
  — Dr. Katz, (24:07)

Practical MS Management: Lifestyle Focus

(33:08 - 41:18)

• Dr. Katz emphasizes lifestyle measures (exercise, diet, quitting smoking) as crucial, especially for progressive MS where drugs may help less.
• Both Dr. Katz and Kathy discuss how to address barriers to exercise: start small, be realistic, build camaraderie/accountability.

"Exercise seems to be one of the best things that you can do for your brain and your nervous system with or without MS... All of us should be, you know, focused on our lifestyle."
— Dr. Katz, (33:08)

• Kathy and guests share practical motivational strategies: group Zoom sessions, accountability, making exercise less overwhelming.

Patient Empowerment: Navigating the Doctor-Patient Relationship

(31:01 - 32:05)

• Panel reassures listeners: it’s acceptable (and sometimes essential) to change neurologists if the relationship isn’t working.
• Dr. Katz recommends seeking second opinions, especially in regions with multiple MS practitioners.

Getting the Most from Your Doctor Visits

(43:41 - 45:03)

• Dr. Katz gives advice: prepare a list, focus on whether the therapy is optimal, what symptoms need to be addressed, the rationale for imaging.

"Go in with a list of symptoms...am I on the optimal treatment for this? What should I be doing differently? And if there's time, when do I need another MRI? ...why is that the answer?"
— Dr. Katz, (44:07)

The Limits of MRI and Biomarkers

(45:14 - 48:47)

• Dr. Katz explains why MRI may not capture all disease activity, especially in progressive MS; specialized imaging (e.g., "pearls" or paramagnetic rim lesions) is promising but not standard yet.
• Clinical evaluation remains crucial: worsening symptoms are more important than MRI findings alone.

Research Horizons: Remyelination, Alternative Therapies

(49:22 - 56:06)

• Remyelination therapies face scientific challenges; Dr. Katz tempers expectations, noting regrowth is complex and outcomes may be less dramatic than some hope for.
• On alternative modalities (e.g., cryotherapy): Dr. Katz is open-minded but emphasizes evidence, safety, and cost.

"I'm not against it. I just don't want to recommend it either. ...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."
— Dr. Katz, (52:54)

Dr. Katz’s Practice Philosophy & Hope for the Future

(27:07 - 31:02)

• Most rewarding moments come from building relationships with patients in crisis and guiding them toward hope and good care.
• Sees upcoming approval for BTK inhibitors as a major step toward addressing progressive MS—an area of greatest unmet need.
• Encourages incremental, evidence-based lifestyle changes for those newly diagnosed, avoiding overwhelm.

Listener Q&A Highlights

(42:35 - 56:06)

• Advice for asking the right questions at appointments (DMT efficacy, MRI timing/rationale, symptom management).
• Nuanced explanations of why MRI can miss progression.
• Realistic approach to remyelination, possibility of new therapies.
• Balance between openness and skepticism for alternative therapies; importance of not forgoing evidence-based care.

Key Takeaways

• MS is heterogeneous. Patient experiences and best treatments vary enormously; shared decision-making is crucial.
• HSCT can halt disease, but for how long remains uncertain. New relapses are possible and monitoring is ongoing.
• Major advances in progressive MS are on the horizon, especially with BTK inhibitors.
• Healthy lifestyle is as vital as medication, especially for those with limited drug options.
• Changing doctors is okay. Come prepared with questions, and seek second opinions if needed.
• Alternative therapies can help symptomatically, but don't replace standard care.
• Don’t overload newly diagnosed patients with life changes; support, education, and hope come first.

Timestamps for Important Segments

• 01:56 – 12:07 Jacob’s diagnosis, early treatments, and spinal tap discussion
• 13:02 – 15:47 HSCT experience & initial remission
• 15:43 – 16:13 COVID-19 relapse and MRI progression
• 18:15 – 20:23 Managing hepatitis B with MS treatment
• 21:10 – 26:08 BTK inhibitors & research outlook
• 33:08 – 41:18 Lifestyle interventions and motivation strategies
• 43:41 – 45:09 Preparing for productive physician appointments
• 45:14 – 48:47 The evolving role of MRI in MS monitoring
• 49:22 – 51:12 Prospects for remyelination therapies
• 52:54 – 56:06 Cryotherapy, alternative treatments, and balancing skepticism with openness

This engaging, candid, and practical Episode 137 (Part 2) is an essential listen for anyone living with MS, their loved ones, or clinicians, blending patient voices with clinical expertise and optimism about future solutions.