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Managing MSA Symptoms and Building Your Care Team

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Managing Multiple System Atrophy (MSA) requires a coordinated team of specialists to address its complex, multi-system symptoms. Treatment focuses on safely managing orthostatic hypotension, resolving bladder retention, and treating sleep breathing issues to maximize quality of life.

Key Takeaways

  • • Multiple System Atrophy requires a multidisciplinary care team, typically led by a movement disorder neurologist, to properly manage its complex symptoms.
  • • Orthostatic hypotension is managed first through lifestyle changes, followed by carefully timed medications to avoid dangerous blood pressure spikes while lying down.
  • • Specialists must carefully coordinate care, as medications for blood pressure and bladder control can dangerously interact and worsen other symptoms.
  • • Stridor, a high-pitched breathing sound during sleep, is a critical symptom that requires immediate attention and may be treated with a CPAP machine.
  • • Levodopa is often less effective for MSA than Parkinson's disease because MSA damages the brain's ability to process dopamine.

Managing Multiple System Atrophy (MSA) requires a coordinated effort from a variety of specialists. Because MSA affects so many different systems in the body, no single doctor can manage it alone. The “standard of care” for MSA is a multidisciplinary approach, which means a team of experts works together to treat your specific symptoms and improve your quality of life [1][2].

Building Your Care Team

An ideal MSA care team is typically led by a Neurologist (specifically a movement disorder specialist) and should include:

  • Urologist: To manage complex bladder and sexual health issues [3].
  • Physical (PT) and Occupational Therapists (OT): To help maintain mobility, safety, and independence [3][4].
  • Speech-Language Pathologist (SLP): To address speech changes and swallowing difficulties (dysphagia) [3].
  • Mental Health Professional: To provide counseling and support for the emotional toll of a progressive diagnosis [5].
  • Palliative Care Specialist: To help manage pain, emotional health, and future care planning [6][2].

Managing Blood Pressure (Orthostatic Hypotension)

Orthostatic Hypotension (OH)—a drop in blood pressure when standing—is a major focus of MSA care. Management usually follows a step-by-step process [7]:

  1. Non-Pharmacological Steps: This is always the first line of defense. It includes increasing salt and water intake, using abdominal binders or compression stockings, and learning physical “countermaneuvers” (like leg crossing) to keep blood pressure up [8][9][10].
  2. Pharmacological Steps: If lifestyle changes aren’t enough, doctors may prescribe medications like midodrine, droxidopa, or fludrocortisone [7][11]. Crucially, these medications should only be taken during active daytime hours and never shortly before lying down or going to bed, as they can cause dangerously high blood pressure while you sleep [12].
  3. The “Supine” Balance: A common challenge is supine hypertension, where blood pressure becomes dangerously high while lying down [12]. To manage this, patients are often advised to sleep with the head of the bed elevated [13][11].

Managing Bladder and the “Interaction Trap”

Bladder issues in MSA, such as urgency or the inability to fully empty the bladder, are often more severe than in other conditions [14]. While medications like anticholinergics can help with urgency, the “gold standard” for managing retention is clean intermittent catheterization (CISC) [15][16]. This requires dedicated hygiene training from your urology team to prevent severe urinary tract infections [17].

The Interaction Trap: Doctors must be extremely careful when prescribing for both blood pressure and bladder.

  • Alpha-blockers (often used for bladder issues) can significantly worsen your orthostatic hypotension, increasing the risk of fainting [18].
  • Conversely, some drugs used to raise blood pressure can worsen urinary retention [18].

Sleep and Breathing (Stridor)

If you or your caregiver notice stridor (a high-pitched, whistling sound during sleep), it is a critical symptom that requires immediate attention [19].

  • CPAP: Continuous Positive Airway Pressure can often resolve stridor and improve sleep quality for both the patient and the caregiver [20][21].
  • Tracheostomy: In cases of severe stridor or breathing obstruction, a tracheostomy (a surgical opening in the neck) may be discussed [22][23]. This is a major, life-altering surgical intervention and a highly personal choice that should be carefully considered with your care team during advance care planning [24].

Why Levodopa Response Varies

While levodopa is the “gold standard” for Parkinson’s, it is often less effective in MSA-P [25]. This is because MSA-P causes striatonigral degeneration—damage to the “receiver” parts of the brain (the putamen) that would normally process the dopamine from the medication [26][27]. Some patients may see a small or temporary benefit, but it often wanes as the disease progresses [28][29].

Frequently Asked Questions

Why do I need a multidisciplinary care team for MSA?
Because Multiple System Atrophy affects many different bodily systems, no single doctor can manage it alone. A multidisciplinary team of specialists, including neurologists, urologists, and therapists, works together to treat your specific symptoms and improve your daily quality of life.
How is orthostatic hypotension treated in MSA?
Treatment usually starts with lifestyle changes like increasing salt and water intake, using compression stockings, and practicing physical countermaneuvers. If these aren't enough, doctors may prescribe specific medications to help maintain your blood pressure while you are standing.
Why do I need to be careful when taking both blood pressure and bladder medications?
Medications used for bladder issues can significantly worsen low blood pressure when standing, increasing the risk of fainting. Conversely, drugs used to raise blood pressure can worsen urinary retention, making it crucial for your specialists to closely coordinate your prescriptions.
What is stridor and how is it managed?
Stridor is a high-pitched, whistling sound made during sleep that indicates a breathing obstruction. It requires immediate medical attention and is often treated with a CPAP machine to keep the airway open, though severe cases may require a tracheostomy.
Why isn't levodopa working well for my MSA symptoms?
Levodopa is often less effective in MSA than in Parkinson's disease because MSA physically damages the receiver parts of the brain that normally process dopamine. While some patients experience temporary relief, the benefits often fade as the disease progresses.

Questions for Your Doctor

  • • Which members of the multidisciplinary team (e.g., Urologist, SLP) should I see first?
  • • Can we review my current medications to ensure my blood pressure drugs aren't making my bladder issues worse, or vice versa?
  • • Is my response to levodopa considered 'poor' or 'transient,' and should we adjust the dose or try a different approach?
  • • If I develop stridor, what is our immediate plan for testing (like a sleep study) and treatment?
  • • What specific non-pharmacological steps for orthostatic hypotension are best for my current stage of MSA?

Questions for You

  • • Am I experiencing dizzy spells when I stand up, and have I tracked which times of day are worst?
  • • How often am I having accidents or feeling like I can't fully empty my bladder?
  • • Is my care partner noticing any new sounds (like stridor) or gasping when I sleep?
  • • What are my current goals for quality of life, and how can my care team help me meet them?

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This page provides educational information on managing Multiple System Atrophy (MSA) symptoms. Always consult your multidisciplinary care team before adjusting your medications, treatments, or care plan.

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