Symptoms and Diagnosis of Huntington’s Disease

Huntington’s disease is a brain disorder that affects movement, thinking and behavior. It is passed down from parents to children and gets worse over time. While there is no cure, early diagnosis and treatment can help manage symptoms and improve quality of life.

At Banner Health, we’re here to help you recognize the signs, understand why early diagnosis matters and prepare for your appointment. 

What is Huntington’s disease?

Huntington’s disease happens because of a change (mutation) in a specific gene. This mutation slowly damages nerve cells in the brain. This mostly affects areas that control movement and thinking. 

Symptoms usually start between ages 30 and 50, but they can appear earlier or later in life. If a parent has Huntington’s disease, their child has a 50% chance of inheriting it.

Learn more about the causes, risk factors and genetics. 

Symptoms of Huntington’s disease

The symptoms of Huntington’s disease are different for each person. Symptoms do get worse over time and new ones can appear. Some of the most common symptoms include:

Movement problems

The motor symptoms of Huntington’s disease are among the first to show up. These symptoms can range from mild to severe and may include:

• Involuntary movements (chorea): One of the most noticeable signs is sudden, jerky movements, known as chorea. These movements can affect any part of the body, making it difficult to perform daily tasks like eating or writing. Movements can occur even during sleep.
• Coordination problems: Trouble with balance or moving smoothly, which can lead to falls.
• Speech and swallowing issues: Weak muscles can make talking and eating more difficult.
• Muscle stiffness (dystonia): Muscles may feel tight or move awkwardly.

Thinking and memory issues

Huntington’s disease can affect the ability to think clearly. This may include:

• Memory loss: Forgetting things, especially short-term memory
• Difficulty solving problems: Planning and decision-making may become harder
• Slower thinking: Processing information or making decisions takes longer
• Poor judgment: Risky or unusual behaviors may appear

Mood and behavior changes

Huntington’s disease can affect emotions and personality. Common changes include:

• Depression: Feeling sad or uninterested in activities
• Irritability: Getting frustrated or angry more easily
• Personality changes: Acting differently than usual or withdrawing from others
• Anxiety: Feeling worried or nervous

Other symptoms

People with Huntington’s disease may also have:

• Sleep problems: Difficulty falling or staying asleep
• Weight loss: Losing weight without trying, which may be caused by involuntary movement or other symptoms
• Difficulty with fine motor skills: Struggling with tasks that need small, precise movements (like buttoning a shirt or using utensils)

These symptoms may be mild at first but get worse over time. Talk to your health care provider if you notice these signs. Early diagnosis can help with symptom management and planning.

Diagnosing Huntington’s disease

There is no single test for Huntington’s disease. Instead, a neurologist (specializing in the brain and nerves) uses a combination of family history, genetic testing, physical and neurological exams and imaging to make a diagnosis.

Step 1: Family history and genetic testing

Since Huntington’s disease is inherited, your provider will ask if anyone in your family has had it. 

A genetic test can confirm the diagnosis by checking for the gene mutation that causes it. The test can also show if you are at risk for Huntington’s even before you have symptoms. 

However, genetic testing is a personal decision. Genetic counseling is often recommended before and after the test to help understand the emotional, social and medical impact. 

Step 2: Physical and neurological exams

Your provider will perform a physical and neurological exam to look at your motor skills, coordination and reflexes. This helps determine whether physical symptoms, such as uncontrolled movements or muscle weakness, are present. They may also test your balance and coordination, memory and thinking abilities.

Step 3: Imaging tests

Brain scans, such as magnetic resonance imaging (MRI), electroencephalography (EEG) or computed tomography (CT) scans, can show changes in the brain caused by Huntington’s. While these scans don’t confirm the disease on their own, they can provide helpful information. 

Step 4: Mental health evaluation

Since mood and behavior changes are common with the disease, your provider may check for symptoms of depression, anxiety or personality changes to help manage them.

How to prepare for your appointment

Being prepared can help you get the most out of your visit. Here are a few steps you can take:

• Write down symptoms: Write down any physical, mental or emotional changes you’ve noticed - even if they are minor.
• Know family history: Share details if a parent has Huntington’s disease.
• Bring support: A family member or friend can help take notes and provide support.
• List medications: Include all current medications, vitamins or supplements you are taking.
• Prepare questions: Write down any concerns about symptoms, genetic testing or treatment options. 

Learn more about the treatment and management of the disease.

Next steps

If you or a loved one is showing signs of Huntington’s disease, early diagnosis and care can make a difference. Banner Health’s expert team is here to help with advanced testing, treatment and support.

Contact us today to schedule an appointment and learn more about how we can help you and your family.