Exploring the Symptoms of Multiple System Atrophy

When diagnosed with Multiple System Atrophy (MSA), one of the most challenging things for the individual and their family, is to understand the wide range of symptoms that can come with it.

MSA is a rare and fast-progressing neurological condition that can affect many body functions. It can affect movement, ‘automatic functions’ such as blood pressure regulation, bladder control and breathing, and cognitive and emotional health.

Knowing and understanding the full range of symptoms can help people living with MSA, or their loved ones, to feel more informed and better prepared.

The purpose of this blog is to help with that understanding, by providing a clear and comprehensive overview of MSA symptoms. It also discusses which symptoms often appear first, how symptoms differ between MSA subtypes, and how they typically progress as the disease develops. It is intended for anyone affected by MSA, as well as those who are simply interested in learning more about this complex condition.

What is Multiple System Atrophy (MSA)?

Multiple System Atrophy (MSA) is a rare and progressive neurodegenerative disorder. It causes nerve cells to deteriorate over time in several key areas of the brain. These regions are responsible for controlling movement, balance, coordination, and involuntary functions such as blood pressure regulation, digestion, and breathing. As more nerve cells are lost over time, the body struggles to carry out these essential functions. ^{1, 2, 3}

There are two main types of MSA, classified based on the main symptoms a person experiences, especially in the early stages:

• MSA-P (Parkinsonian type) involves symptoms similar to Parkinson’s disease, such as slowness of movement, muscle stiffness, and tremor.
• MSA-C (Cerebellar type) is characterized by problems with balance and coordination as it primarily affects the cerebellum, the part of the brain that helps control these abilities. ^{1, 2, 3}

This blog takes a closer look at the different symptoms MSA can present, helping readers gain a broader understanding of how the condition can impact various body functions. Learn more about causes, diagnosis, and treatments in our blog: Understanding Multiple System Atrophy.

What are the Symptoms of Multiple System Atrophy?

Multiple System Atrophy (MSA) symptoms most commonly begin between the ages of 50 and 60. However, they can start anytime from the age of 30. ^{2, 3, 4} Symptoms often progress rapidly over the course of 5 to 10 years. ²

People with MSA may have several symptoms at once. These may affect:

• Autonomic functions (such as breathing, blood pressure, and digestion, which the body controls automatically without conscious effort).
• Movement and coordination.
• In some cases, thinking and emotional capacities. ^{1, 2, 5, 6}

How MSA Affects Autonomic Functions: Blood Pressure, Bladder, and More

For most people with MSA (around 70%), symptoms involving involuntary or automatic body functions appear first. These early symptoms are caused by damage to the autonomic nervous system. This is the part of the nervous system that controls involuntary or automatic functions such as blood pressure regulation, bladder and bowel control, digestion, temperature regulation, and sexual function. These are functions the body normally manages without conscious effort.

These can show up months or even years before movement issues begin. ^{1, 2, 5, 6} They can include:

Problems with blood pressure control

Multiple System Atrophy (MSA) damages the parts of the brain that normally helps regulate blood pressure automatically. As a result, the body can’t properly adjust blood pressure in response to certain activities.

MSA can cause a sudden drop in blood pressure in situations like:

• • Standing up after sitting or lying down: This is called orthostatic hypotension. It’s one of the earliest and most common symptoms of MSA. ^{1, 2, 5, 6}
  • After eating: Some people with MSA experience a drop in blood pressure within 2 hours after meals, known as postprandial hypotension. ^{7, 8, 9, 10}
  • During or after exercise: Physical activity may also cause blood pressure to drop. ¹⁰

Symptoms of low blood pressure can include:

• • Dizziness or feeling unsteady.
  • Lightheadeness.
  • Blurry vision.
  • Fainting.
  • Fatigue or weakness.
  • Chest pain.
  • Nausea. ^{5, 7, 10}

Some people with MSA experience high blood pressure when lying down, especially at night, a condition called supine hypertension. It affects about half of those with orthostatic hypotension. Supine hypertension may not always cause symptoms. But when it does, it can lead to:

• • Worsened morning dizziness: When a person stands up in the morning, their blood pressure may drop sharply, especially after lying down all night with high blood pressure.
  • Headaches.
  • Nighttime urination.
  • Over time, it may also raise the risk of heart and kidney problems. ^{10, 11, 12, 13}

Sexual dysfunction

Sexual dysfunction is a common, and often early, symptom of Multiple System Atrophy (MSA). It happens because MSA affects the autonomic nervous system, which control automatic body functions, including sexual response.

In men, erectile dysfunction is often the first sign of MSA. This means trouble getting or keeping an erection firm enough for sex. ^{5, 6, 14, 15}

On average, this symptom may appear about four years before an official diagnosis of MSA. ⁶ Men may also experience:

• • Reduced sexual desire.
  • Ejaculatory difficulties. ^{5, 6, 14, 15}

In women, sexual dysfunction can include:

• • Vaginal dryness.
  • Reduced sexual desire.
  • Difficulty reaching orgasm.
  • Pain during sex. ^{6, 14, 15, 16}

Bladder problems

Bladder problems are very common in people with Multiple System Atrophy (MSA). They are often one of the earliest signs of the disease. ^{1, 6, 15}

Early bladder symptoms may include:

• • Frequent urination: Needing to urinate more often than usual, even if the bladder isn’t full. It can include nocturia or the need to urinate frequently at night. ^{1, 6, 15}
  • Urinary urgency: A sudden, intense urge to urinate that can be hard to control. ^{1, 6, 15}
  • Urinary incontinence: Leaking urine before reaching the bathroom. ^{1, 6, 15}

As the disease progresses, people may also have difficulty fully emptying the bladder, which can lead to urine left behind, raising the risk of urinary tract infections, kidney swelling, and even kidney damage. ¹⁷

Bowel issues

Along with bladder symptoms, bowel problems are also common in people with Multiple System Atrophy (MSA). ^{1, 5}

The most frequent bowel issue is constipation. This can start early in the disease and may include:

• • Infrequent bowel movements.
  • Straining during bowel movements.
  • A feeling that the bowel hasn’t fully emptied.

In some cases, especially in later stages of MSA, people may also experience bowel incontinence, which means accidental loss of stool. ^{6, 18, 19}

Sleep disturbances

Many people with Multiple System Atrophy (MSA) experience sleep problems. In about 20% of cases, sleep-related symptoms can be among the first signs of the disease. ⁶

The most common is rapid eye movement sleep behavior disorder (RBD), which is also frequently an early symptom of the disease. People with RBD act out vivid and sometimes violent dreams while sleeping without being aware of it. Movements may include kicking, punching, flailing, or shouting during sleep. ^{10, 20, 21}

Other sleep issues in MSA may include:

• • Trouble falling asleep.
  • Frequent nighttime awakenings (also called sleep fragmentation).
  • Poor overall sleep quality.
  • Excessive daytime sleepiness: feeling unusually tired, drowsy, or sleepy during the day, even after a full night’s sleep. ^{10, 21}

MSA can also cause breathing problems during sleep, including:

• • Sleep apnea: This is a serious problem in which breathing is repeatedly interrupted during the night. ^{10, 21}
  • Stridor: A harsh, high-pitched sound during breathing, caused by narrowing or blockage in the upper part of the airway. ^{10, 21}

Decreased ability to sweat

People with Multiple System Atrophy (MSA) may have trouble regulating their body temperature due to a reduced ability to sweat. This condition is known as anhidrosis. ^{1, 5}

Sweating is the body’s natural way to cool down. When the sweat glands don’t work properly, as in some cases of MSA, it can lead to overheating or feeling unusually hot or cold.

In MSA, this can happen in different ways:

• • Some people stop sweating completely.
  • Others may sweat less in some areas, but more in others, as the body tries to compensate. ²²

When the body can’t sweat normally, it can cause problems like:

• • Feeling dizzy.
  • Having red or hot skin.
  • Muscle cramps.
  • Feeling weak.
  • Always feeling too warm. ²²

How MSA Affects Movement and Coordination

In Multiple System Atrophy (MSA), movement-related symptoms usually appear after autonomic symptoms like blood pressure or bladder issues. However, in about 10% of people, mild movement symptoms may appear early in the disease. ⁶

Movement symptoms vary depending on the type of MSA a person has:

• • MSA-P (Parkinsonian type) tends to cause symptoms similar to Parkinson’s disease.
  • MSA-C (Cerebellar type) primarily affects balance and coordination.

Over time, people with either type of MSA often develop a mix of symptoms. For example, more than half of those with MSA-C eventually develop Parkinsonian features, and many with MSA-P also experience cerebellar symptoms. ^{17, 23, 24, 25, 26}

Parkinsonism symptoms

Parkinsonian features are typical of MSA-P. They often resemble those seen in Parkinson’s disease. In some cases, symptoms may start on one side of the body, but typically spread quickly to both sides ^{1, 17}

Parkinsonian symptoms may include:

• • Muscle stiffness or rigidity.
  • Slowed movements (bradykinesia).
  • Tremors.
  • Poor balance.
  • Unclear or mumbled speech.
  • Frequent falls. ^{1, 17}

Multiple System Atrophy (MSA) progresses faster than Parkinson’s Disease. Many people with MSA-P require walking aids within three years of symptom onset, and up to 60% may need a wheelchair within five years. ¹⁷

Cerebellar symptoms

Cerebellar symptoms are typical of MSA-C. They may include:

• • Clumsy or poorly coordinated limb movements.
  • Unusually wide steps when walking.
  • Action tremor (shaking that gets worse when trying to use the affected body part).
  • Slurred or shaky speech.
  • Difficulty swallowing.
  • Jerky or unstable eye movements, which can make it hard to focus or follow moving objects. ^{1, 17, 27, 28}

Thinking and Memory Challenges in MSA

Cognitive problems affect how the brain processes information. This can impact memory, attention, language, or problem-solving. Some people with MSA develop mild cognitive issues, while others may notice more severe changes over time. ^{1, 5, 10}

The most common cognitive MSA symptoms include:

Thinking and planning skills (executive function)

This involves the ability to plan, organize, stay on task, and switch between ideas or activities. About 50% of people with MSA have trouble in this area. ¹⁰ Common signs include:

• • Trouble finding the right words.
  • Difficulty staying focused.
  • Repeating the same behaviors or words (called perseveration) for example, asking the same question multiple times or getting stuck doing the same task over and over. ¹⁰

 Memory issues

This includes:

• • Trouble learning or remembering new information.
  • Forgetting things shortly after seeing or hearing them.
  • Difficulty recognizing familiar objects or people. ¹⁰

Understanding space and direction

MSA can also affect how people understand and move through space, which is called visuospatial ability. This means people may:

• • Struggle judging distances or directions.
  • Get disoriented in familiar places.
  • Have trouble copying shapes or figures accurately.¹⁰

Emotional Changes in MSA

People with Multiple System Atrophy (MSA) may experience emotional changes that affect how they feel, act or respond to situations. It may include:

• • Sudden episodes of uncontrollable crying or laughing, known as pathological laughter and crying (PLC). ^{5, 10}
  • Depression.
  • Anxiety. ^{1, 10}
  • Psychosis or hallucinations in rare cases (seeing or hearing things that aren’t there).¹⁰

Conclusion

Multiple System Atrophy (MSA) is a progressive neurodegenerative disorder caused by the deterioration of nerve cells in key areas of the brain. It affects involuntary (autonomic) functions, movement, and, in some cases, thinking and emotions. Symptoms usually begin between the ages of 50 and 60, but can appear as early as 30.

In about 70% of people, the first signs involve autonomic issues such as blood pressure problems, sexual dysfunction, bladder or bowel difficulties, sleep disturbances, and reduced ability to sweat. Movement symptoms typically appear later and vary by type. MSA-P (parkinsonian type) causes stiffness, tremors, and slowed movement, while MSA-C (cerebellar type) affects coordination, leading to clumsiness, wide-based walking, and jerky eye movements.

Some people also experience cognitive problems, such as memory loss or difficulty understanding spatial relationships. Emotional changes are also common and may include depression, anxiety, or episodes of uncontrollable crying or laughing. MSA tends to progress quickly, with symptoms typically worsening over five to ten years.

At myTomorrows, we have a team of Patient Navigators, who are multi-lingual professionals with a medical background, who can help you to explore your treatment options and support you through your journey.

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