Progressive supranuclear palsy - Diagnosis of progressive supranuclear palsy

Diagnosing progressive supranuclear palsy (PSP) can be difficult because its symptoms are similar to other more common movement disorders.

A diagnosis will be based on the type and pattern of your symptoms and ruling out other conditions that can cause similar symptoms.

The diagnosis must be made by a consultant with expertise in PSP (usually a neurologist).

Imaging scans

If you have symptoms of PSP that suggest there's something wrong with your brain, it's likely you'll be referred for a brain imaging scan.

Types of scan that you may have include:

• magnetic resonance imaging (MRI) scan  - where a strong magnetic field and radio waves are used to produce detailed images of the inside of the brain
• positive emission tomography (PET) scan - similar to an MRI scan, a PET scan has the added advantage of being able to assess how different parts of the brain are functioning

These types of imaging studies can be useful in ruling out other possible conditions, such as brain tumour or stroke.

They can also help detect abnormal changes to the brain that are consistent with a diagnosis of PSP, such as shrinkage in the cortex and basal ganglia.

Ruling out Parkinson’s disease

You may be prescribed a medication called levodopa which can help determine whether your symptoms are caused by PSP or Parkinson’s disease. People with Parkinson’s disease usually experience a marked improvement in their symptoms after taking levodopa.

However, this is not the case for people with PSP as levodopa usually only has a limited beneficial effect in 1 in 3 people with the condition.

Neuropsychological testing

It's also likely you'll be referred to a neurologist (a nerve and brain specialist) and possibly also a psychologist for neuropsychological testing.

This involves having a series of tests that are designed to evaluate the full extent of your symptoms and their impact on your mental abilities.

The tests will look at abilities such as:

• memory
• concentration
• understanding language
• the processing of visual information, such as words and pictures

Most people with PSP have a distinct pattern in terms of their mental abilities, including poor concentration, a low attention span and problems with spoken language and processing visual information. Their memory of previously learned facts is usually unaffected.

Emotional support

Once other possible causes of your symptoms have been ruled out, a confident diagnosis of PSP can usually be made.

Being told that you have PSP can be an emotionally devastating experience, and the news can often be difficult to take in. Therefore, it's important that you have the support of your family and care team, who will be able to help you come to terms with the diagnosis.

A charity called The PSP Association can give you information and practical advice about living with PSP, as well as providing you with support to help you cope with the emotional impact of the condition.

As your symptoms progress, you'll require full-time care and equipment, such as a wheelchair, to help with mobility.

Read a practical guide to caring and adjusting to a disability for more information.