MS Living Well: “Uncommon Multiple Sclerosis Symptoms”

Host: Barry Singer, MD
Guests: Dr. Mary Ann Picone, Dr. Bruce Hughes
Date: May 7, 2024

Episode Overview

Dr. Barry Singer is joined by Dr. Mary Ann Picone and Dr. Bruce Hughes—both highly experienced MS specialists—to raise awareness about uncommon symptoms of multiple sclerosis (MS). The conversation dives deep into symptoms often overlooked by both patients and clinicians, which can delay diagnosis and symptom relief. The episode is rich with practical advice, vivid descriptions from clinic experiences, and treatment options, all designed to empower the MS community with critical knowledge.

Key Discussion Points & Insights

Introduction: The Importance of Recognizing Uncommon MS Symptoms

• Dr. Singer stresses the need to address MS symptoms beyond the well-known ones like fatigue, bladder dysfunction, or numbness.
• Overlooked symptoms can lead to missed or delayed diagnosis and treatment.
  • “There exists a spectrum of symptoms that often slip under the radar, overlooked by both patients and clinicians. Unfortunately, this can lead to both a delay in diagnosing multiple sclerosis and starting treatment.” — Dr. Barry Singer [00:40]

With Dr. Mary Ann Picone

Lhermitte’s Sign (Electric Shock Sensation)

[02:11–03:38]

• An early MS sign: electric shock/tingling sensation down the spine when flexing the neck.
• Caused by cervical cord demyelination.
• Often brief and “not painful, just weird or off putting perhaps.” — Dr. Picone [03:08]
• Can go undiagnosed for years if clinicians aren’t aware.
  • “I wish more primary care docs would be aware of this… years can go by of missing the early diagnosis.” — Dr. Singer [03:25]

Trigeminal Neuralgia (Facial Pain)

[03:40–09:36]

• Excruciating, sudden, electric-bolt face pain—often misdiagnosed as dental problems.
• Loss of myelin in the brainstem affects the trigeminal nerve.
  • “Pain in MS overall is still a bit under recognized. It’s at least 50–60% of patients have some type of pain. And trigeminal neuralgia tends to be unfortunately one of the worst.” — Dr. Picone [03:52]
• Patients have undergone unnecessary dental procedures before correct diagnosis.
  • “They think it’s a dental problem... the dentist starts going after teeth when it’s really a nerve pain problem.” — Dr. Singer [05:47]
• Treatments:
  • Seizure meds (gabapentin, carbamazepine, oxcarbazepine, topiramate, pregabalin)
  • Short steroid courses if acute/new
  • MRI to rule out new lesions
  • Surgical procedures (gamma knife, radiofrequency ablations) for refractory cases
  • “The biggest thing is just to be able to function, be able to work, be able to eat, brush their teeth… without having to be fearful that it’s going to trigger some pain.” — Dr. Picone [09:01]

MS Hug (Painful Torso Squeezing)

[09:36–11:45]

• Described as a tight, squeezing, painful band around the chest or stomach.
  • “Not a kind, gentle hug, it’s a painful hug.” — Dr. Singer [09:36]
• Often caused by thoracic spinal lesions.
• Can be intermittent or constant; may worsen with heat, fatigue, or relapse.
• Treatments:
  • Relaxation/stretching, muscle relaxants (baclofen, tizanidine)
  • Nerve pain meds (gabapentin, pregabalin)
  • Antidepressants (amitriptyline)
  • “Some patients seem to respond better to the muscle relaxants... while other patients seem to respond better to nerve pain medications...” — Dr. Singer [11:45]

Uhthoff’s Phenomenon (Heat-Related Worsening of Symptoms)

[11:45–13:44]

• Hot temperatures (or fever/infections) can worsen visual loss, numbness, tingling.
• Symptoms reverse when cooling down.
• Tips: air conditioning, cooling vests, bandanas, cool showers.
  • “If you cool down the temperature, the symptoms go away.” — Dr. Picone [12:14]

Muscle Spasms, Clonus, Spasticity

[13:44–16:17]

• Painful muscle contractions (flexor and extensor spasms).
• Spasms can interfere with sitting, walking, daily activities.
• Treated with physical therapy, muscle relaxants, occasionally anticonvulsants or cannabis.
• Clonus: Involuntary foot/leg bouncing due to spinal demyelination.
  • “…hyperexcitability of the stretch reflexes and that causes the clonus.” — Dr. Picone [15:43]

Slurred Speech & Swallowing Problems

[16:20–19:19]

• Slurred speech (dysarthria) and difficulty swallowing (dysphagia) signal possible brainstem involvement.
• Particularly concerning if swallowing liquids triggers choking (risk of aspiration).
• Thorough speech assessment and modified barium swallow recommended.
  • “The most concerning aspect... is if it is associated with problems with swallowing... because it can be life threatening.” — Dr. Picone [16:28]
• Tips for safe eating: posture, food consistency, small bites, moist foods, liquids between bites.
• Speech therapy may address both issues.

Closing Comments from Dr. Picone

• “My pleasure. And I'll end by saying, since we’re getting into the summer months, everybody stay cool and keep those cooling vests on to prevent the Uhthoff’s phenomena.” — Dr. Picone [19:40]

With Dr. Bruce Hughes

Vertigo (Spinning Sensation)

[20:36–23:42]

• MS-related vertigo (central vertigo) is constant and not just positional.
  • “Vertigo is definitely a challenge... Our MRI scans aren’t particularly sophisticated at small lesions inside the brainstem… So even though you don’t see a lesion there, there could be something there.” — Dr. Hughes [20:51]
• Peripheral vertigo is brief and positional (e.g., rolling over in bed).
• Key clues to MS vertigo: associated symptoms like facial numbness, weakness, double vision, balance issues.
• Important to conduct a detailed neurologic exam, look for nystagmus (eye movement abnormalities).

Hearing Loss

[23:42–24:48]

• Rare in MS; sudden or one-sided hearing loss is more worrisome for an MS lesion.
• Gradual bilateral loss more likely due to aging or noise.
  • “If you have associated hearing loss, especially if it’s one sided… that would steer you to be more concerned.” — Dr. Hughes [23:58]
• Responsive to high-dose steroids if acute.

Visual Disturbances: Shaky Vision & Double Vision

[24:48–27:09]

• Optic neuritis (pain, vision loss in one eye) is familiar but double vision and nystagmus (shaky vision) may signal brainstem attacks.
• Treatments:
  • Non-pharma: occupational therapy, eye patching, neuro-ophthalmologic prisms for double vision.
  • Pharma: gabapentin, memantine, sometimes baclofen or dalfampridine.
  • “It’s important to try and figure out which type of nystagmus it is because there may be a specific treatment out there.” — Dr. Singer [26:32]

Bowel Dysfunction

[27:09–29:44]

• Constipation is more common than incontinence, but both can occur.
  • “The majority of bowel cases are on the underactive side... but there is urgency.” — Dr. Hughes [27:33]
• Contributing factors: hydration, high-fiber diets, some MS meds causing colitis.
• Treatments: water intake, nutrition, stool softeners, prescription meds like Linzess (linaclotide), caution with laxatives. Some patients benefit from probiotics.
• Anticholinergic medications for urgency/incontinence.

Sexual Dysfunction

[29:44–32:57]

• Both men and women experience underreported sexual symptoms.
  • Men: erectile dysfunction (ED), ejaculation issues (sometimes from meds, e.g., antidepressants).
  • Treatments: ED meds (Viagra, others), testosterone checks, urology referral for advanced approaches.
  • “Sometimes our medications... are causing the problem with the difficulty with ejaculation… We’re treating one thing and causing a problem with another.” — Dr. Hughes [29:51]
  • Women: painful intercourse (dyspareunia), vaginal dryness, decreased arousal.
  • Solutions: lubrication, devices, psychological support.

Pseudobulbar Affect (Involuntary Emotional Expression)

[32:57–34:06]

• Uncontrollable laughing or crying, disconnected from real emotions.
  • “Somebody is at a funeral and they are busting out laughing or the opposite… and they feel fine. They just can’t control the emotion.” — Dr. Hughes [33:17]
• Treatable with specific medications (often combination therapies).

Notable Quotes & Memorable Moments

• “[Lhermitte’s sign]…not painful, just weird or off putting perhaps, but it’s very short lived and usually just for less than a minute.” — Dr. Picone [03:08]
• “Many of my patients that have had natural childbirth and kidney stones, they say [trigeminal neuralgia] is by far the worst. It’s pretty excruciating.” — Dr. Singer [05:16]
• “Sometimes people will come in with a scarf around their face because they're afraid that the air conditioning or a cold breeze can trigger it.” — Dr. Picone [05:36]
• “‘MS hug’ is not a kind, gentle hug, it’s a painful hug.” — Dr. Singer [09:36]
• “It is this uncomfortable, painful feeling of tightness and pressure... Often… due to MS lesions in the thoracic spine.” — Dr. Picone [09:50]
• “Education helps alleviate fears and worries. We should have concern about our conditions, but we shouldn’t have fears and worries.” — Dr. Hughes [34:21]

Timestamps for Key Segments

• [00:06] — Episode introduction & goals
• [01:53] — Welcome Dr. Picone: her approach and experience
• [02:11] — Lhermitte’s Sign discussion
• [03:40] — Trigeminal Neuralgia: description, misdiagnosis, treatment
• [09:36] — The MS Hug: definition, risks, treatment
• [11:45] — Uhthoff’s Phenomenon and advice for coping with heat
• [13:44] — Muscle Spasms, Spasticity, Clonus explained
• [16:20] — Speech and Swallowing Difficulties: assessment and management
• [19:40] — Dr. Picone’s closing advice
• [20:36] — Welcome Dr. Hughes: uncommon symptoms
• [20:51] — Vertigo: distinguishing MS vs. other causes
• [23:42] — MS-related Hearing Loss
• [24:48] — Shaky Vision, Double Vision, and Nystagmus in MS
• [27:09] — Bowel Dysfunction: constipation, urgency, management
• [29:44] — Sexual Dysfunction in MS: men and women
• [32:57] — Pseudobulbar Affect: definition and management
• [34:21] — Final advice from Dr. Hughes

Takeaway

This episode spotlights painful, alarming, or awkward symptoms that frequently go unaddressed—sometimes initially mistaken for dental, cardiac, or psychiatric issues. Both experts encourage listeners not to ignore “weird” or brief symptoms and to speak openly with their MS care teams. Individualized approaches, practical tips, and targeted therapies exist for these uncommon symptoms, but awareness and communication are critical first steps.

For resources and expanded information, see the show notes or visit mslivingwell.org.