Living Well with Multiple Sclerosis – “Webinar Highlights: Your opportunity to speak to a Neurologist about Living Well with MS with Dr Aaron Boster” (S6E19, aired 18 September 2024)
Episode Overview
This episode features highlights from the Overcoming MS webinar "Ask Aaron: Your Opportunity to Speak to a Neurologist," with Dr. Aaron Boster, an award-winning MS neurologist. Dr. Boster answers a broad range of questions from the global MS community, sharing practical advice and evidence-based strategies for living well with MS. Major topics include the concept of "benign MS," maximizing neurologist appointments, the latest on disease management therapies, brain atrophy, MRI best practices, managing progressive MS, bladder and dystonia issues, alternative and adjunct therapies, and the vital role of lifestyle in MS management.
Key Discussion Points & Insights
1. Challenging the Concept of "Benign MS"
- Dr. Boster questions the use of the term "benign MS," likening it to "the Tooth Fairy" and arguing it's a misnomer that leads to false complacency among patients and clinicians.
- "The concept of benign Ms. is something that many Ms. neurologists, myself included, don’t believe in. It's like the Tooth Fairy. It's not actually real." — Dr. Boster [01:48]
- He stresses the ongoing nature of MS and the need for vigilance, even if the disease appears inactive.
- “As long as the person who’s asking the question has an immune system, it’s going to attack the brain and spinal cord.” [03:46]
- He calls for abandoning the term "benign" to prevent neglectful care.
- “I think it breeds laziness amongst neurologists. Oh, you're benign, honey. Don't worry, it's benign. Well, to me, that's a recipe for let's not pay attention, let's not look for fear that we might suddenly not be benign.” — [04:37]
2. Maximizing Time with Your Neurologist
- Dr. Boster emphasizes preparation: document medications and questions ahead of appointments.
- “Write down every single one of your medicines in all of the current doses... Write down all of your questions, write them down on a piece of paper and number them.” [05:11]
- Bring a friend/family member for support and to help note details.
- Patients should recognize that appointments are intimate, serious conversations, not casual exchanges.
- “You’re discussing, literally, bowel, bladder, bedroom—I mean very, very intimate things.” [05:21]
- He describes how both doctor and patient should prepare, highlighting the shared responsibility.
- “I am preparing to meet with you. Are you preparing to meet with me?” [08:53]
3. Understanding and Addressing Brain Atrophy
- Brain atrophy is a natural process but is accelerated in untreated/undertreated MS.
- “In the setting of untreated multiple sclerosis... we can see brain atrophy which is happening too quickly. It's accelerated brain shrinkage upwards of 10 times the normal rates.” [09:47]
- Lifestyle changes—especially exercise, diet, vitamin D supplementation, and avoiding smoking—have substantial protective effects.
- “Exercise slows brain volume loss. So it’s like a freaking medicine.” [11:00]
- Cutting out sugar and avoiding smoking are among the most important non-pharmaceutical interventions.
- Among DMTs, newer drugs (e.g., teriflunomide, fingolimod, B-cell depletors) particularly slow brain atrophy.
- “Some of the newer medicines… are remarkable at slowing brain volume loss.” [12:41]
- Early intervention with effective drugs preserves neurological reserve.
4. MRI Best Practices for MS
- Optimal brain volume assessment requires high-resolution MRIs—no skipped slices.
- “What you need is no gap… It’s 1 millimeter cut… because we're not skipping anything.” — [14:36]
- For patients with access or financial barriers, communicate with your neurologist to maximize practical utility.
5. Progressing from RRMS to SPMS and Implications for Treatment
- Dr. Boster clarifies that evolving classification does not mean a sharp change in disease biology; it's a spectrum.
- “It's the same thing with these Ms. phenotypes. We draw a Line in the sand and say, now you're secondary progressive Ms… It’s inaccurate.” [19:57]
- Aubagio (teriflunomide) remains useful in SPMS: especially valuable for slowing progression and brain volume loss—don’t stop without medical advice.
- “Aubagio is really good at slowing progression of disability.” [20:50]
6. Ocrevus Dosing and Family Planning
- Currently, Ocrevus (ocrelizumab) is standardized at every 6 months, but some variation in practice occurs.
- Dosing schedules might evolve, but patients should not adjust without guidance.
- Regarding pregnancy, wait at least 4.5 months post-infusion before trying to conceive.
- “At month four and a half, I think you could take the proverbial condom off, because… you’re no longer exposing the fetus to antibodies.” [25:00]
- Always consult with your clinician before making family planning decisions.
7. Managing Dystonia in MS
- Primary treatments: physical therapy and Botox, with phenol injections as another option.
- Movement disorder specialists and physiatrists are best equipped for complex cases.
8. Current Options for Bladder Dysfunction
- Overactive bladder is very common and hugely impacts quality of life.
- Key non-pharmaceutical interventions:
- Reduce bladder irritants (alcohol, caffeine)
- Proper hydration: aim for 100 oz water/day (women), 120 oz (men)
- Timed voiding (e.g., go to the toilet hourly)
- Concentrate fluid intake in first half of day
- “If you were to make one change to help overactive bladder, it would actually be to increase your fluid intake.” [31:37]
- Pharmaceuticals are available when non-drug interventions are insufficient.
9. Low Dose Naltrexone (LDN) as Adjunct Therapy
- LDN is not scientifically proven or approved for MS, but not dangerous or costly.
- “If you tell me that you want to take LDN in addition to a DMT… I am more than happy to do that because it doesn't violate any of my rules. It's not expensive, it's not dangerous, and it's not instead of something that I know works.” — [36:30]
10. Other Alternative Approaches
- Cold water swimming/showers: no solid evidence for MS, but can boost attention for some (anecdotally).
- “There's no compelling evidence that it helps your health long-term… If a cold shower snaps you into attention, there may be some value.” [39:07]
11. Immune Reconstitution Therapy
- Reboots the immune system; can induce remission (absence of disease activity for five years without treatment)—not a cure.
- “If the person goes five years without being retreated and has no disease activity, I write in the chart remission… It is not a cure.” [41:53]
12. Diet, Exercise, and “5-for-5” Approach
- Dr. Boster’s “5-for-5” for living your best life with MS:
- Don’t smoke
- Exercise regularly
- Supplement low vitamin D
- Daily mindfulness practice
- Take the most effective medication you’re comfortable with—and ensure it’s working
- “Is it possible that you can do it without medicines? It’s possible, but it’s very, very unlikely and the statistics are not in your favor.” — [43:58]
- The Overcoming MS Program is highlighted as an excellent lifestyle regimen.
Notable Quotes & Memorable Moments
- On “benign MS”: “It's like the Tooth Fairy. It's not actually real.” – Dr. Boster [01:50]
- On leveraging your neurologist appointment: “I am preparing to meet with you. Are you preparing to meet with me?” – Dr. Boster [08:53]
- On brain health: “Exercise slows brain volume loss. So it's like a freaking medicine.” – Dr. Boster [11:00]
- On treatment during disease progression: “Would I stop the drug? Absolutely not. I would continue to take it and I would leave it in the background because I think it risks doing some really, really good things.” – Dr. Boster [21:37]
- On LDN: “It can’t be too expensive. It can’t be dangerous. It needs to be in addition to stuff I know that works.” – Dr. Boster [36:00]
- On holistic management: “I want to do anything known to God and man to make MS boring.” – Dr. Boster [00:01 and 44:14]
Timestamps for Key Segments
- [01:48] – Benign MS is a problematic term
- [05:11] – How to prepare for neurologist visits
- [09:47] – Brain atrophy in MS explained
- [14:36] – MRI best practices for assessing brain atrophy
- [18:47] – Aubagio and secondary progressive MS
- [22:25] – Ocrevus dosing, label, and pregnancy safety
- [26:49] – Approaches for MS-related focal dystonia
- [28:38] – New treatments and practical tips for bladder dysfunction
- [35:19] – Low Dose Naltrexone (LDN) and MS
- [39:07] – Cold water therapy—does it help?
- [39:45] – Immune reconstitution therapy and MS remission
- [43:29] – Can diet and exercise alone control MS? “5-for-5” holistic strategy
- [44:14] – The goal: making MS “boring”
This episode, rich with practical advice, science-based recommendations, and lively, compassionate communication, is a valuable resource for anyone managing MS—or supporting someone who does. Dr. Boster's passionate, plainspoken explanations offer both clarity and hope, reinforcing that persistent vigilance and holistic, multifaceted strategies are key to living well with multiple sclerosis.