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Frequently asked questions

What is MSA?

Multiple system atrophy (MSA) is a progressive neurological disorder that affects adult men and woman. It is caused by degeneration or atrophy (shrinking) of nerve cells in several (or multiple) areas of the brain. This can result in problems with movement, balance and autonomic functions of the body such as bladder and blood pressure control.

Why has nobody heard of MSA?

MSA is a rare disease with around 3,300 people in the UK and Ireland currently living with it. This means that most people will never have heard of the condition, unless they themselves have already met someone with MSA. Sadly, this is also true for a lot of health professionals which is why the MSA Trust works to raise awareness and increase understanding of MSA throughout the UK and Ireland. Try not to be worried if professionals that you meet have not heard of MSA. They are experts in their professional role with much to offer you, and can become experts in MSA through caring for you.

People involved with supporting you may have questions about MSA, as you yourself will. Answering these may be easier by:

  • Having standard answers ready in case people ask about it. For example: “I have a movement disorder that affects my walking, balance, speech and co-ordination”
  • Having the Trust’s information materials, such as the Guide to MSA, ready to hand to anyone who asks about it (available by contacting the Trust office)
  • Giving your GP and therapists the Trust’s contact details and asking them to contact us so they can get further information themselves.

How can I talk to others affected by MSA?

The MSA Trust runs Support Groups and other occasional events across the UK and Ireland. To find out about what’s happening in your area click here.

If Support Groups are not for you then you could try our online forums, either on our website here or the MSA HealthUnlocked Community here.

Why was I initially diagnosed with something else or why did my diagnosis take so long?

It is common for people with MSA to be first diagnosed with another condition because there are often similarities between neurological conditions in their early stages. About two thirds of people with MSA receive an initial diagnosis of Parkinson’s disease but others may receive a diagnosis of conditions such as, Ataxia or Pure Autonomic Failure. The way MSA progresses over time will distinguish it from other diseases so a diagnosis can often take a number of years.

Will my children or family get MSA?

There is no evidence that MSA is a hereditary condition and it is not contagious or infectious.

What about dementia? Is this part of MSA?

Whilst dementia isn’t considered to be a part of MSA for the majority of people, there can be some cognitive issues affecting the thought processes and sometimes behavioural changes. If confusion occurs, however, it is most likely to be caused by an infection.

Can I travel abroad on holidays?

Yes. Holidays are important and there is no reason for you not to take a holiday with some extra planning and the correct arrangements in place.

Take care in the sun, especially if you have been told you have low blood pressure (postural hypotension). You can also become dehydrated more quickly and need to drink extra fluids in hot weather.

Travel companies should be made aware of any special requirements and you will need to ensure the accommodation is suitable. The Trust has a factsheet, ‘Travelling and MSA’, which has information about travelling and includes details of travel insurance companies and holiday providers. This can be downloaded from our factsheet section here. There is also information available from Disability Rights UK on holidays with special facilities in the UK and abroad.

What sort of diet should I be on?

There is no special diet recommended for MSA, although eating a balanced diet with fibre, protein, fresh fruit and vegetables is important. If you have postural hypotension there is some dietary advice to help prevent a drop in blood pressure in the ‘Postural Hypotension’ factsheet available here. If you have swallowing difficulties it is important to see your local speech and language therapist who will advise on the best type of food and drinks for you.

I am worried about my partner having to look after me

At some point you may need someone to help look after your everyday needs. Professionals within the health and social care systems can provide advice and practical help for you, and can also support your partner, if you have one. Assessments for both of you are an entitlement and are available through your local Council’s Adult Social Care team.

Who can give me help in getting things sorted out at home?

There are many people who can support you and will be involved in your care. The Assessments provided by the Adult Social Care team (see above) should help you identify the things you need help with. Other professionals, such as your GP, Occupational Therapist, Parkinson’s Nurse Specialist and MSA Nurse Specialist, will also be able to advise you and help you find the appropriate support. Contact us at the Trust for further information about this.

I’m worried about my finances

Having MSA may mean that you have to stop working sooner than you anticipated – maybe before you can claim your pension which can be worrying. There are a range of benefits and tax allowances available whether you are still working or are unable to work, are of working age or over pension age. The amount of benefit available to you will be assessed on your individual circumstances and the level of your disability. Carers may also be entitled to benefits. The Trust has a factsheet summarising the benefits available which can be downloaded here. For a comprehensive assessment of entitlements, contact your local Social Care department or the Citizens Advice Bureau. The website www.turn2us.org.uk may also be able to help with your query.

What about the future?

Many of the ideas and plans you had for your future may need to change following a diagnosis of MSA. People adjust to this change in different ways. There is no one plan to help you cope, but there are many people out there who can offer help and support, not least of these is the MSA Trust and specifically our MSA Nurse Specialists. Thinking ahead and talking things through with your family can help you to make choices and future plans.

Why has palliative care been mentioned to me?

Palliative care is about maintaining and maximising quality of life for you and those close to you. It is the medical specialty focused on relief of the pain, stress and other debilitating symptoms of serious illness. Hospice care and hospice services are one group of services providing palliative care which may be provided at any time during a person’s illness from the time of diagnosis onwards. Palliative care teams include specialist nurses, doctors and hospices. They may also be able to offer individualised respite care. More about palliative care can be found in the ‘Understanding Palliative Care’ factsheet available here.

Further information about MSA can be found in our ‘Guide to MSA’. If you would like more copies of this please email us on support@msatrust.org.uk and we will be happy to send this to you.

REVISION DATE: 03/18 | REVIEW DATE: 03/20 | VERSION: 2.0

Disclaimer

We have taken every care to ensure the accuracy of the information contained in this publication. It is produced independently, is not influenced by sponsors and is free from endorsement. The information should not be used as a substitute for the advice of appropriately qualified professionals, if in any doubt please seek advice from your doctor or legal professional.

References for this information sheet are available by contacting support@msatrust.org.uk.

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Your feedback helps us ensure we are delivering information to the highest standard. If you have any comments or suggestions please complete a short survey by following the links from our website: www.msatrust.org.uk or by contacting us at support@msatrust.org.uk.

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