Breaking it Down – A Multiple Sclerosis Podcast

Episode: MS Myths and Jargon Explained
Host: MS Trust (Nick & Helena)
Guests: Dr. Kate Petheram (Neurologist), Simon (MS Trust Helpline Manager), Stephen (MS Trust Fundraiser, living with MS)
Date: January 21, 2025

Episode Overview

This episode tackles common myths and confusing jargon around multiple sclerosis (MS). Hosts Nick and Helena are joined by neurologist Dr. Kate Petheram, helpline manager Simon, and MS Trust fundraiser Stephen. The team separates fact from fiction, addresses new and evolving terminology, and provides honest answers to community questions. With insights from both clinical and lived experience, the aim is to empower listeners with clear, trusted MS information.

1. The Importance of Fact Checking in MS Information

00:37 – 01:04

• Hosts reflect on the current prevalence of misinformation online, stressing the critical need for reliable, fact-checked information about MS.
• Helena: “It's really hammering home the importance of knowing what's a fact and what's a myth and what's fiction. So I think this podcast will be rather timely.”

2. Explaining MS Jargon with Dr. Kate Petheram

02:11 – 44:48

a) Different Types of MS

03:03 – 06:36

• Traditional Classifications:

  • Relapsing-Remitting MS (RRMS): Characterized by distinct attacks (relapses) which then generally improve (remit).
  • Secondary Progressive MS (SPMS): Disability worsens over time, with or without relapses.
  • Primary Progressive MS (PPMS): Disability increases from onset; no relapses.

• Evolving Understanding:

  • Dr. Petheram: "I feel very strongly that we should be getting away from these very strict definitions...we recognize that MS is kind of one condition but with different phases." (04:46)

b) What is a Relapse?

06:36 – 07:54

• Definition: New inflammation in brain/spine causing new symptoms, appearing over days to weeks (sometimes months), typically stabilizing and improving.
• Distinction: Old symptoms flaring (from infection, stress, fatigue) are not a relapse but a 'flare’.
  • Dr. Petheram: "A relapse is new symptoms caused by inflammatory activity in the brain or spinal cord." (07:22)

c) Pseudo-Relapse

07:54 – 08:47

• Explanation: Symptoms from old damage temporarily worsen, often triggered by infection, but not due to new inflammation.

d) Oligoclonal Bands (OCBs)

09:01 – 10:30

• Definition: Proteins in spinal fluid used to diagnose MS.
  • “90–95% of people with MS will have what we call unmatched oligoclonal bands.” (10:20)

e) Key Abbreviations

10:45 – 18:51

CIS (Clinically Isolated Syndrome)

10:45 – 12:49

• First episode suggestive of MS. Not all develop into MS.

RIS (Radiologically Isolated Syndrome)

13:17 – 14:28

• MRI lesions typical for MS, found incidentally, before symptoms.

PIRA (Progression Independent of Relapse Activity)

15:02 – 15:44

• Progression in MS not linked to relapses.
  • "People can progress without having relapses, and that's what PIRA is." (15:14)

RAW (Relapse Associated Worsening)

16:18 – 17:16

• Some disability results from incomplete recovery after relapses.

Smouldering MS

17:22 – 18:51

• Ongoing, low-level inflammation in MS lesions—akin to “a fire that never fully goes out.”

CVS (Central Vein Sign)

18:57 – 20:46

• MRI finding specific to MS, helping distinguish it from other conditions—requires advanced imaging.

f) Symptom Jargon

21:30 – 38:08

Ataxia

21:43 – 24:49

• Poor balance, coordination (often likened to feeling drunk). Causes: cerebellar damage or sensory loss.

Spasticity

25:18 – 28:19

• Stiffness/increased muscle tone owing to disrupted messages to muscles; variable day-to-day; treatable with exercises, medication.
• Dr. Petheram: "It's important to differentiate it from spasticity to weakness, which is also very disabling." (27:40)

MS Hug

29:06 – 32:10

• "Not huggy at all"—a tight, band-like sensation often in the chest or abdomen, usually from spinal cord lesions.
• Dr. Petheram: “It can come and last between seconds to minutes, sometimes hours before it then releases again.” (30:08)
• Seek medical advice to rule out cardiac or abdominal emergencies.

Allodynia

32:22 – 33:38

• Pain from stimuli that shouldn’t be painful (e.g. mild touch).

Dysaesthesia

34:13 – 36:31

• Abnormal, unpleasant sensations (e.g. pins and needles, burning).

Crap Gap

38:08 – 41:43

• Feeling worse before next disease-modifying therapy infusion. No proven biological basis; possibly influenced by expectation.

Dr. Petheram: "I don't think it — you know, it's not, it's not, you know, necessary to bring treatments forward for these reasons necessarily. But again, being kind to yourself, recognizing and acknowledging it." (41:21)

g) Navigating Changing Terminology

43:27 – 44:48

• Terms like PIRA and “progression” are increasingly replacing older, rigid categories; but "relapsing-remitting" and "secondary progressive" persist in trials and drug licensing.

3. MS Myths: Fact or Fiction?

46:45 – 73:56 With Simon (Helpline) and Stephen (Fundraiser/living with MS)

a) Myth 1: “MS is Fatal”

47:51 – 49:55

• Fact: MS itself is rarely fatal.
  • Simon: "MS, except in very rare instances, isn't a fatal condition... it's a condition you live with." (48:45)

b) Myth 2: “Everyone with MS Will Use a Wheelchair”

50:04 – 52:39

• False: Large variation; most people never use a wheelchair.

c) Myth 3: “People with MS Can't Work”

52:47 – 56:12

• False: Many continue to work (with or without adjustments).
• Employment rights protected under the Equality Act.

d) Myth 4: “Only Older People Get MS”

56:20 – 59:26

• False: Most people diagnosed in their 20s-30s, but can occur at any age.

e) Myth 5: “Exercise Is Bad for People with MS”

59:26 – 66:07

• False: Tailored activity is generally beneficial; the key is to match activity to energy levels (Spoon Theory explained – 61:54).

f) Myth 6: “MS Runs in Families—It’s Hereditary”

66:26 – 70:50

• Not strictly hereditary; higher risk for siblings, but no single gene causes MS.
• Simon: "None of them [genes] on their own will cause that, but if you have enough... then you will be susceptible to MS." (69:15)

g) Myth 7: “I Must Have Caused My MS”

70:50 – 73:56

• False: No evidence that lifestyle or parental actions 'cause' MS.
• Dr. Petheram: “You're living with MS... but you are by no means responsible for it and don't ever think that way, please.” (71:44)

4. Combating Misinformation and Navigating Online Advice

74:09 – 77:56

• Importance of checking information sources, questioning advice (even from self-styled online experts).
• Advocating fact-checking, especially regarding treatments—always consult health professionals.

5. Handling Jargon in Healthcare

76:12 – 77:56

• Advice to ask healthcare professionals to clarify jargon and terminology.
  • Helena: “There are no questions that are stupid when it comes to your health. You really need to understand it.” (77:20)
• The MS Trust helpline is available for further explanation and support (contacts given).

6. Notable Quotes & Memorable Moments

• On changing MS definitions:

  • Dr. Petheram: “We recognize that MS is kind of one condition but with different phases.” (04:46)

• On wheelchair use:

  • Stephen: “It's such a broad spectrum...there is no guarantee you're going to be in a wheelchair.” (50:16)

• On working with MS:

  • Stephen: “It's not your fault, you did not ask for this. And there is no reason to believe that…you can't still contribute and work as before.” (53:14)

• On inherited risk:

  • Simon: “The majority of people with MS probably don't have a family member with MS.” (70:26)

• On self-blame:

  • Stephen: “You're living with MS... but you are by no means responsible for it and don't ever think that way, please.” (71:44)

• On medical jargon:

  • Helena: “Sometimes these things don't make sense and...it might feel embarrassing, but honestly, there are no questions that are stupid when it comes to your health.” (77:20)

7. Additional Resources and Support

• MS Trust Helpline: 0800-03-23839 (Mon–Fri, 10am–4pm)
• Email: askrust.org
• More information: MS Trust website and A–Z resource pages

8. Final Thoughts

• Myth-busting and unpacking jargon can empower people living with MS.
• Encouragement to trust only fact-checked sources, ask questions freely, and seek support from trusted organizations like the MS Trust.
• Community involvement: Listeners invited to submit more myths or jargon for future explanation.

This episode is an invaluable guide to making sense of MS information, supporting listeners with clear explanations, expert input, and real-life perspectives—helping all affected by MS to navigate their journey with confidence and insight.