Many people with MSA may have had a diagnosis of Parkinson's disease (PD) initially. Both MSA and PD cause stiffness and slowness in the early stages. The additional problems like swallowing and dizziness that develop in MSA are unusual in early PD. These additional problems, together with loss of certain nerve cells and the presence of inclusion bodies, make MSA a separate and distinct disorder from PD.
Will my children get MSA?
There is no evidence that MSA is an hereditary condition.
What about dementia? Is this part of MSA?
Dementia is not a symptom of MSA. However, some people may find that their thinking and memory can become slower.
Why has no-one heard of MSA?
Specialists in neurology have only recently begun to understand MSA and realise that it is not as rare as they once thought. The information learnt about MSA takes time to filter down to other professionals. Try not to be worried if professionals that you meet have not heard of MSA. They can become experts by caring for you.
Be prepared to cope with questions about MSA by
- having a standard answer ready, e.g. "it's like Parkinson's disease but I have extra problems such as low blood pressure"
- having the Sarah Matheson Trust (SMT) information leaflets handy to show your family and friends
- giving your therapists the SMT contact details, so they can get further information themselves
The dizziness may be due to your blood pressure falling when you stand up or change position. This drop in blood pressure is called Postural Hypotension. In addition to medication there are several things you can do to relieve this symptom. These include increasing your fluid and salt intake as well as calf exercises to help your blood flow. It is important that you avoid sudden changes in position like rising to your feet and plan your periods of activity for later in the day. Medication to help blood pressure can be very effective. There is a postural hypotension leaflet available from the SMT, or see our postural hypotension page.
I am unsteady on my feet.
This may be due to problems with balance. People often feel they need to use furniture for support. Physiotherapists and occupational therapists can provide advice and equipment to help you move safely.
I feel stiff and find it difficult to get moving.
Medication used in controlling Parkinson's disease can help reduce stiffness. Blood pressure medication may also help some people. Physiotherapy can also prove useful with tips to get you moving. This is important as inactivity will worsen the problem.
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Stairs are difficult; I feel unsafe.
Going up and down stairs requires mobility and balance - both can be affected in MSA. A physiotherapist can help improve your safety on the stairs. At some point a stair lift may become advisable and social services can advise on funding for this. An occupational therapist can help you to plan your living space to minimise the need to the use the stairs.
My partner says I stop breathing at night.
Stopping breathing at night (sleep apnoea) is sometimes associated with snoring. If you feel tired and lethargic during the day, it may mean that you have low oxygen levels because of sleep apnoea. Sleep studies may be done to see how this symptom is affecting you and it may be necessary for you to have some breathing assistance at night from a piece of equipment called CPAP (Continuous Positive Airway Pressure). CPAP delivers air into your airway through a specially designed nasal mask or pillows. This can help improve your quality of sleep and can travel with you wherever there is electrical power. Other breathing problems in MSA are deep sighs, and noisy breathing.
I laugh and cry at the silliest things.
This common problem in MSA is not a sign of dementia. Even when people cry frequently it may not be a sign of depression but if excessive crying is bothering you, anti-depressants may help.
I'm getting really constipated.
Constipation is common in MSA. It is to be avoided where possible as straining will affect your blood pressure. It is important to drink plenty of fluids and include lots of fibre in your diet. Daily medication to prevent constipation is often needed to maintain a regular bowel habit.
I am having problems being intimate with my partner
Erectile dysfunction is common in men with MSA. There are various treatments that help maintain intimacy between couples but may reduce spontaneity. Seeking help on this issue is important and you should not be embarrassed to ask your doctor.
What is a sphincter EMG?
This is a specialised test that can help with diagnosing MSA by assessing the nerve supply to the sphincter (outlet) of the bladder or bowel. This involves inserting a needle into the muscle; some people find this uncomfortable. It is not widely available.
My bladder never feels completely empty.
Your bladder may not empty completely and, if you are leaving any behind (a residual volume), this can cause urine infections. Bladder surgery is very unlikely to improve this problem but a continence advisor can help you learn techniques such as intermittent self catheterisation to make you more comfortable.
I keep having to go to the toilet at night.
People with MSA produce less urine during the day and more at night. If this problem is resulting in disturbed sleep, medication (DDAVP) can help relieve the symptoms by reducing urine production overnight. You may also consider using a commode or urinal at the bedside to reduce the effort of getting to the bathroom. This is especially important if you have postural hypotension or are prone to falls.
What sort of diet should I be on?
There is no special diet recommended for MSA, although eating a balanced diet, with fibre, protein, and fresh fruit and vegetables is important. If you have postural hypotension, there is some dietary advice to prevent the drop in blood pressure in the postural hypotension leaflet from the SMT. Drinking plenty of liquids is important too.
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I cough and choke after meals.
This could be a sign that you have a problem swallowing. Coughing is a normal reaction to help prevent food going into your lungs and causing infection. A speech therapist can assess the strength of your swallow and together with a dietician will advise on the best type of food for you.
What is a gastrostomy tube?
If you are continually losing weight, doctors may suggest a gastrostomy tube. This is a small tube, called a PEG, that is inserted into your stomach through your abdomen during a minor procedure. This tube will provide your nutritional and fluid requirements and is hidden under clothes when not in use. A special liquid diet is fed at times that fit into your daily activities. Medication can also be given through the gastrostomy tube. Although the prospect of this tube may be daunting, it can be a good way to help control symptoms, and is reversible. Many people with a gastrostomy tube are still able to eat small amounts of food for pleasure.
I am worried about my partner having to look after me.
At some point in all our lives we will need someone to help look after some of our everyday needs. With MSA this point may come sooner than anticipated. Professionals within the health and social care systems can help your partner to look after you. A Carers Assessment is available through the local social services. Contact your local Social Services Adult Disability Team.
Who can give me help in getting things sorted out at home?
There are many people who will be involved in your care either via the GP and hospital or through social services and other voluntary organisations. Contact the Adult Disability Team at your local Social Services department for an assessment. The Citizens' Advice Bureau and Carers UK are two organisations that also advise on help and support locally.
I'm worried about the financial implications of having MSA.
Having MSA may mean that you will have to stop working sooner than you anticipated - maybe before you can claim your pension. There is a range of benefits and tax allowances that are available whether you are still working or are unable to work. The amount of benefit available to you will be assessed on your individual circumstances and the level of your disability. The SMT has a leaflet summarising the benefits available. For a comprehensive assessment of your entitlement contact your local Social Services department.
Why has palliative care been mentioned?
Palliative care specialists manage symptoms in a wide range of illnesses. Palliative care teams include specialist nurses, doctors and hospices. They may also be able to offer individualised respite care. Hospice care is designed to involve the whole family.
Can I travel abroad on holidays?
Travel abroad is possible with the correct arrangements in place. Travel companies will need to be made aware of your special requirements and you will need to ensure the accommodation is suitable. There is an information leaflet available from RADAR on holidays with special facilities in the UK and abroad. The SMT has details of companies that offer travel insurance to people with disabilities.
Take care in the sun, especially if you have postural hypotension.
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