Newly Diagnosed With Multiple System Atrophy
Understanding Your Diagnosis. Finding Support. Taking the Next Steps.
Receiving a diagnosis of Multiple System Atrophy (MSA) can bring many questions, emotions and uncertainties.
You may be trying to understand what the diagnosis means, how the condition might affect your life and what support is available.
For family members, friends and carers, the news can also be difficult to process.
At National MSA Research, we recognise that every person’s experience of MSA is different.
Some people want to learn as much as possible immediately. Others prefer to take time to understand the information and consider their next steps.
There is no single way to approach this experience.
This page brings together information, practical suggestions and resources that may help you navigate the early stages following a diagnosis.
Understanding Your Diagnosis
Multiple System Atrophy is a rare, progressive neurological condition that affects the brain and nervous system.
It can interfere with movement, coordination, balance and automatic bodily functions, including blood pressure regulation, bladder control and swallowing.
MSA is commonly classified into two types:
MSA-P: Characterised mainly by movement symptoms such as stiffness and slowness.
MSA-C: Characterised mainly by difficulties with coordination and balance.
Both types may involve symptoms affecting the autonomic nervous system.
Not everyone experiences the same symptoms, and the rate of progression varies between individuals.
There is currently no cure for MSA. However, medical treatment, rehabilitation and supportive care may help manage particular symptoms and maintain quality of life.
Learn More About Multiple System Atrophy
Your First Steps Following Diagnosis
There can be a great deal of information to consider following a diagnosis.
The following suggestions may help you prepare for conversations with your healthcare team and explore appropriate support.
1. Stay Connected With Your Healthcare Team
A neurologist, preferably one experienced in movement disorders, plays an important role in diagnosing and managing MSA.
Your general practitioner (GP) can also assist with ongoing healthcare, referrals and coordinating relevant services.
Ask your treating team about follow-up appointments, symptom monitoring and who to contact if your condition changes.
2. Understand Your Current Symptoms
MSA can affect several different bodily functions.
Your healthcare team may ask about movement difficulties, dizziness, bladder problems, sleep, speech and swallowing.
Keeping notes about symptoms and changes may help you explain what you’re experiencing.
You do not need to diagnose or interpret these symptoms yourself.
3. Discuss Available Treatments
Although treatment cannot currently cure MSA or stop its progression, medical professionals can recommend strategies for managing particular symptoms.
Ask which treatment options are relevant to your current needs and whether specialist or allied health referrals may be helpful.
4. Explore Practical Support
You may wish to discuss mobility, home safety, communication needs or everyday activities with your healthcare team.
Support from a physiotherapist, occupational therapist, speech pathologist or other professional may become useful.
Some people benefit from having these conversations early, even before substantial assistance is required.
5. Take Care of Your Emotional Wellbeing
A diagnosis can affect emotional wellbeing as well as physical health.
If you are feeling distressed, anxious or overwhelmed, consider speaking with a trusted person or a qualified healthcare or mental health professional.
Support may also be available for family members and carers.
Questions to Ask Your Neurologist
Medical appointments can be an important opportunity to learn more about your diagnosis.
You may wish to ask:
- How confident are you about my diagnosis?
- Which symptoms and findings suggest MSA?
- Do I have predominantly MSA-P or MSA-C symptoms?
- Are further investigations needed?
- Which symptoms should I pay particular attention to?
- What treatment options are available for my current symptoms?
- Would referrals to allied health professionals be appropriate?
- How frequently should my condition be reviewed?
- What changes should prompt me to seek medical advice?
- Who should I contact if I experience new or worsening symptoms?
- Are there reputable support organisations or educational resources you recommend?
You may find it helpful to write down questions before your appointment.
If you wish, you could also ask a trusted family member or support person to attend with you.
Building Your Healthcare Team
MSA can affect different parts of the body, so care often involves more than one healthcare professional.
Depending on your circumstances, your healthcare team may include:
Neurologist: Assesses neurological symptoms and coordinates specialist management.
General Practitioner: Provides ongoing general healthcare, referrals and care coordination.
Physiotherapist: Assists with mobility, balance, movement and physical functioning.
Occupational Therapist: Helps identify strategies and equipment for everyday activities.
Speech Pathologist: Assesses changes in speech, communication and swallowing.
Dietitian: Provides advice about nutritional needs and difficulties with eating.
Continence Specialist or Urologist: Assists with bladder-related symptoms.
Respiratory or Sleep Specialist: Investigates breathing and sleep-related concerns.
Social Worker or Mental Health Professional: May provide emotional and practical support.
Palliative Care Team: Can assist with complex symptoms and quality-of-life support. Palliative care is not limited to end-of-life care.
Your GP and neurologist can help identify which services are appropriate for you.
Preparing for Changes in Daily Life
Living with MSA may involve adjustments as symptoms develop.
Some individuals experience difficulties with walking, coordination, standing, communicating or completing everyday activities.
Others may experience symptoms affecting blood pressure, bladder function or sleep.
The support needed will depend on each person’s circumstances.
An occupational therapist or physiotherapist can help identify practical strategies that support safe movement and daily functioning.
It may also be helpful to discuss your changing needs with family members or other trusted people.
You do not need to plan every aspect of the future immediately, but early conversations can make it easier to access appropriate support when required.
Keeping Important Health Information Together
Medical appointments, investigations and changing symptoms can involve a considerable amount of information.
You may find it useful to maintain a folder or digital record containing:
- Your healthcare professionals’ contact details.
- Current medication information.
- Appointment dates and relevant questions.
- Copies of medical reports provided to you.
- Notes about symptoms and significant changes.
- Information about relevant support services.
- Care plans and other important documents.
Our Patient & Family Toolkit includes practical resources intended to help with organising information and preparing for appointments.
Explore the Patient & Family Toolkit
Support for Family Members and Carers
A diagnosis of MSA can affect the whole family.
Partners, relatives, friends and carers may experience their own questions and concerns about the condition.
Caring responsibilities may change as symptoms develop.
It can be helpful to discuss how support will be organised, what assistance may be available and how everyone involved can communicate their needs.
Carers should also have opportunities to access information and support for their own wellbeing.
Our Patient & Family Support page provides links to relevant resources and organisations.
Explore Patient & Family Support
Finding Support in Australia
Depending on your circumstances, you may be eligible for assistance through Australian health, disability, aged care or community support services.
Relevant pathways may include Medicare-funded healthcare arrangements, the National Disability Insurance Scheme (NDIS), My Aged Care or other available services.
Eligibility varies according to individual circumstances and the requirements of each program.
Your GP, treating team or an appropriate support professional may be able to help you understand which services are relevant.
Our Australian Support Services page provides information to help you explore available options.
Explore Australian Support Services
Understanding Research and Clinical Trials
Research into Multiple System Atrophy is continuing.
Scientists are investigating the biological processes involved in MSA, opportunities to improve diagnosis and potential treatments.
Some individuals may wish to learn about clinical trials or research participation.
Clinical trials have specific eligibility requirements and involve important considerations, including potential risks and benefits.
Participation is voluntary and does not guarantee access to a treatment or a particular medical outcome.
If you are interested in research participation, speak with your treating healthcare professional.
Explore MSA Research and Clinical Trials
When Should You Seek Medical Attention?
MSA can affect functions that are important for everyday health and safety.
Contact your healthcare team promptly if you experience new or worsening symptoms, particularly difficulties with swallowing, repeated fainting, significant mobility changes or unusual breathing sounds.
For a serious medical emergency, including severe breathing difficulty or choking that threatens the airway, call Triple Zero (000) in Australia.
If you are unsure whether a symptom requires urgent assessment, seek advice from an appropriate healthcare professional.
You Can Learn at Your Own Pace
There is a great deal of information available about Multiple System Atrophy.
Not all of it will be relevant to your circumstances, and some material may be difficult to read.
You may prefer to focus first on understanding your current symptoms and care needs.
As questions arise, your healthcare team can help explain which information is relevant.
We encourage you to use reputable medical and research sources and to be cautious about unproven treatments or claims of a cure.
About National MSA Research
National MSA Research was established in October 2024 following the loss of Adrian Klep to Multiple System Atrophy.
His family’s experience inspired a commitment to increasing awareness of MSA, supporting access to appropriate information and encouraging scientific research towards better diagnosis, more effective treatments and ultimately a cure.
Our mission is guided by three principles:
Awareness — Helping more people understand Multiple System Atrophy.
Alleviation — Supporting access to appropriate information and resources for people affected by MSA.
Advancement — Encouraging scientific collaboration and research towards meaningful progress.
We recognise the experiences of individuals living with MSA, their families and those who provide care.
Through our website, we aim to make reliable information and relevant resources easier to find.
Find More Information
Explore the following sections of our website:
- Understanding Multiple System Atrophy.
- Types of MSA.
- Diagnosis of MSA.
- Treatment and Management of MSA.
- Patient & Family Toolkit.
- Australian Support Services.
- Helpful Organisations.
- MSA Research and Clinical Trials.
General Information and Enquiries
If you have a general question about National MSA Research or the information available on our website, please contact us.
National MSA Research
Rare Neurological Disease Research Ltd
ABN: 55 681 229 032
Email: info@nationalmsaresearch.org.au
Website: www.nationalmsaresearch.org.au
Combatting MSA Together — Through Awareness, Alleviation and Advancement.
Medical disclaimer: This information is intended for general educational purposes only and does not replace professional medical advice, diagnosis or treatment. National MSA Research does not provide clinical care or emergency assistance. Please consult an appropriately qualified healthcare professional about individual medical circumstances.