Living Well with Multiple Sclerosis

Episode: Ask Aaron – Your opportunity to speak to a Neurologist about living well with MS | S7E17

Date: August 20, 2025
Guest: Dr. Aaron Boster (Boster Center for MS)
Host/Moderator: Regina Beach (OMS community member)

Episode Overview

This special episode is a highlights reel from a live “Ask Aaron” webinar, featuring Dr. Aaron Boster, an award-winning neurologist specializing in MS. The discussion focuses on practical, nuanced advice for living well with MS, addressing common symptom challenges, medication decisions, lifestyle modifications, women’s health, and the most recent research developments, with direct input from the audience.

Key Discussion Points & Insights

1. Lifestyle Approaches for MS Management

• Smoking:

  • “Smoking speeds up MS by 50%. It doubles the risk to develop MS. And stopping smoking slows it down.” (00:00, Dr. Boster)
  • Emphasized as the top modifiable risk factor.

• Exercise as Lifestyle:

  • Exercise should be “woven into the fabric of your week… integrated into just part of your daily activities, like brushing your teeth and wearing clothes, if you wear clothes.” (00:14, Dr. Boster)
  • Not punitive or reward-based, but a core habit.

• Diet and Mindfulness:

  • Encourages “eating smart”, “mindfulness”, checking vitamin D, and avoiding processed foods.
  • “Mindfulness is a tool to learn to manage stress… stress worsens MS.” (38:19)

Memorable Tool

• Dr. Boster’s “5 for 5” Self-Management Rules:
  1. Don’t smoke
  2. Exercise regularly
  3. Eat smart (avoid processed foods, sugar, fried food)
  4. Practice daily mindfulness
  5. Take the most effective DMT you’re comfortable with
     (36:52)

2. Medical Management & Medication Choices

• Collaboration and Respect for Patient Choices:

  • “Would I like that person to start a disease-modifying therapy? Yeah, I would… But that doesn't make them bad or naughty or wrong if they see it differently.” (03:47)
  • Critical to align “the most effective DMT you’re comfortable taking.” (04:43)

• Swelling in Lower Limbs (Edema):

  • Ruling out cardiac causes first; MS can reduce calf muscle pump.
  • Practical tips: Slightly elevate foot of bed, compression stockings, feet up during day, massage, “any movement you can do will help.” (06:18–08:17)

• BTK Inhibitors and New Drug Classes:

  • Evobrutinib trial failed due to unexpectedly strong comparator arm; not the end for the whole class. Five other BTK inhibitors in trials with diverse properties. “We have no idea [yet]. The molecules are different… We’ll learn over the next three years as the trials complete.” (08:41–12:01)
  • Emerging hope: Anti-CD40 ligand drugs (e.g. Frexa), now entering trials. (17:19)

• Disease Activity on MRI Without Symptoms:

  • Importance of all three measures: lived experience, clinical exam (“MS Olympics”), and MRI.
  • “If one of them is not okay, we're not doing okay. …MRI activity gives us a window of opportunity to make a potential change.” (12:20–15:12)
  • Regular MRIs are most important when you feel well.

3. Supplements & Alternative Therapies

• Lion’s Mane and Functional Mushrooms:

  • Fascinating, but “data in humans is not really very good… and the data in MS is non-existent.” (15:21)
  • Safe if not replacing proven therapies, and if not too expensive.

• Vitamin D:

  • Target blood level 50–100 nmol/L.
  • “The totality of the data suggests a very strong association [between high D and better outcomes]… Take whatever dose gets you into range, check labs twice a year, especially in winter.” (33:56)

• Omega-3s and Alpha Lipoic Acid:

  • Omegas “absolutely on point.”
  • Alpha lipoic acid: “Some data for pain control in neuropathy, not MS. Some of my patients feel it helps with neuropathic pain, some don't.” (41:53)

• Other:

  • Red and near-infrared light therapy: “I really don’t know” but early data is “provocative.” (42:13)
  • Black cohosh, SSRIs for menopause/perimenopause symptoms (25:16-27:44)

4. Women’s Health Topics

• Pregnancy & DMTs:

  • Citing a French study: A woman can receive Ocrevus, wait six months, conceive, have an unmedicated pregnancy and breastfeeding period, then resume Ocrevus—“None… had a single attack in the Ocrevus arm. Zero.” (23:06–25:00)

• Menopause:

  • “Hormonal system has a massive impact on MS… progression after menopause starts to mirror that of men.” (25:16)
  • Recommends single-agent estrogen HRT (patch, for safety), in collaboration with OB-GYN, to mitigate increased symptoms and progression. “This is an opportunity for collaboration… a three-way conversation.” (25:16–28:32)

5. When to Stop DMTs? Lesions & Symptom Recovery

• DMTs After Age 55:

  • Strongly advises against stopping; research shows a third progress more rapidly if DMTs stopped at/after 55. (28:47)
  • “We should stop treating at death.”

• MRI Lesions and Symptoms:

  • Lesion = scar; may not disappear or correlate with symptom improvement.
  • “Lesions shrinking as you age sometimes just means brain is shrinking.” (28:47–31:31)

6. Pediatric-Onset MS

• Not seeing a real increase in incidence; better awareness and diagnostics.
• “Prognostically, pediatric onset is a better prognosis than later onset.” (31:46)
• “Operetta trial” underway: Ocrevus vs Gilenya in kids, “very, very exciting” (31:46–33:32)

7. Heat & Cold Sensitivity

• Winter:
  • Plan for spasticity, falls; layer clothing and pace activities (39:37)
• Summer:
  • Cooling vests, hydrate with ice water, exercise in cool environments, timing activities before or after heat of day.
• Medication:
  • Fampyra/Ampyra may help with heat sensitivity. (39:37–41:22)

8. Additional Rapid-Fire Audience Q&A

• Mental Health Link:
  • “Like 90%. Like a lot? Like a bunch. A bunch.” (41:30)
• Long-term Side Effects (Kesimpta):
  • “No, I don’t.” (41:38)
• Brain Shrinkage Prevention:
  • “There’s one that is really, really potent… Exercise.” (45:10)
• MS & Thyroid Disease:
  • Slightly increased risk of autoimmune thyroid disease and thyroid cancer; monitor depending on therapy. (43:40)
• Best Support for Newly Diagnosed Friend:
  • Be a good listener, believe them, educate yourself (OMS website/Youtube), offer tangible help. (44:24)

Notable Quotes & Memorable Moments

• “Being a good listening ear means not giving them dumb advice.” (44:24)
• “There are neurologists who believe that after the age of 55… you can stop medicines. And they are wrong.” (28:47)
• “The bottom line is sometimes nature’s too generous… and we shouldn’t take it laying down.” (27:44)
• “If a doctor tells you that a drug doesn’t have a side effect, leave.” (19:01)
• “There’s two kinds of MS as best I can tell: there’s progressive forms and relapsing forms.” (21:07)
• On drug side effects: “I’m much more scared about under-treated or untreated MS than I am about side effects for something I can monitor and hopefully control.” (20:56)

Timestamps for Key Segments

| Time | Segment | |-----------|--------------------------------------------------| | 00:00 | Smoking and lifestyle pillars | | 02:07 | Supporting patients not on DMTs | | 05:25 | Managing swelling in feet/legs | | 08:41 | BTK inhibitors & new drug classes | | 12:20 | MRI activity with no symptoms | | 15:21 | Lion’s mane and supplements | | 17:19 | Pipeline drugs: anti-CD40 ligands | | 19:01 | Weighing cancer/infection risk with DMTs | | 21:07 | Treating secondary progressive MS, DMT philosophy | | 23:06 | Pregnancy planning and DMT | | 25:16 | Menopause, perimenopause, HRT | | 28:47 | Stopping DMTs and lesion invisibility | | 31:46 | Pediatric MS, diagnosis trends, trials | | 33:56 | Vitamin D guidance and dosing | | 36:23 | Why neurologists don’t discuss lifestyle | | 39:37 | Heat and cold sensitivity practicalities | | 41:25 | Timeline for myelin repair drugs | | 41:30 | MS and mental health | | 44:24 | Supporting someone newly diagnosed | | 45:10 | Exercise slows brain shrinkage |

Tone & Delivery

Dr. Boster is both compassionate and direct, combining scientific rigor and extensive clinical experience with humor (“if you wear clothes”), plain English, and a refreshingly patient-centered approach. The session is highly interactive, lively, and accessible, empowering listeners with both agency and practical, actionable knowledge.

For more details, bonus materials, and support, visit:
overcomingms.org/podcast