Multiple system atrophy (MSA)

Multiple system atrophy (MSA) is a neurological condition that affects adults. It's caused by the degeneration (damage) or atrophy (shrinking) of nerve cells in different parts of the brain.

Symptoms of multiple system atrophy

Everyone with MSA will experience different symptoms. Symptoms often start between the ages of 50 and 60, but they can begin anytime from the age of 30.

You're likely to experience muscle control or balance problems, like those of Parkinson's disease or Ataxia. It's a progressive disease which means symptoms will worsen over a period of time.

MSA can cause symptoms including:

bladder problems like a constant need to pee, loss of bladder control (urinary incontinence) or being unable to pee
low blood pressure when standing up which might cause dizziness or fainting (postural hypotension)
erection problems like erectile dysfunction
problems with co-ordination, balance and speech (cerebellar ataxia)
tremor, slowness and muscle stiffness
constipation

Someone with MSA might also have:

uncontrollable laughing or crying
problems with sleep like insomnia, restless legs or nightmares
noisy breathing
unintentional sighing
weak, quiet voice
shoulder and neck pain
problems controlling sweating
swallowing problems including difficult chewing and choking episodes
blurred vision
cold hands and feet

Causes of multiple system atrophy

The cause of MSA is not clear. It's not thought to be inherited.

Having MSA appears to be random. It's not because of something the person with MSA has done. It has no connection to multiple sclerosis (MS).

There's ongoing research into the possible causes of MSA.

Diagnosing multiple system atrophy

There are many neurological conditions that look similar in the early stages. It might take some time to get a diagnosis of MSA.

There isn't a specific test for MSA. Your doctor will look at your symptoms and rule out other conditions, like Parkinson's disease.

It's more likely you have MSA if:

your symptoms have progressed quickly
you've had falls in the early stages of the condition
you don't respond well to the medicine levodopa
your speech has been severely affected
you gasp and breathe noisily

If your doctor thinks you might have MSA, they'll test your reflexes and bodily functions like bladder control and blood pressure.

You might have a brain scan, like an MRI scan, to detect if there's been a loss of brain cells.

Treating multiple system atrophy

There isn't a cure for MSA and there isn't a way of slowing its progress.

As symptoms worsen, you might need help managing day to day life.

Visit the MSA Trust website for information and support about living with MSA. They have a dedicated MSA charity nurses who can help to support you.

Treatment of MSA involves a combination of medication, specialist equipment and the involvement of therapists to manage specific symptoms. It might take time to find the right combination of treatments which work best for you.

Movement problems

You might be prescribed medication to help with the stiffness and slowness caused by MSA. Their benefits are limited and they can make blood pressure problems worse.

A physiotherapist can give you regular exercises to do. This can help strengthen your muscles and prevent your joints from stiffening.

They'll also consider if there's any equipment that would help you like a walking frame or shoes that can help reduce your risk of falls.

You might be taught breathing exercises to reduce the chance of developing aspiration pneumonia (a chest infection caused by inhaling particles of food into your lungs) when you eat.

Balance difficulties

Physiotherapists and occupational therapists can provide advice and equipment to help you live safely. For example, they might suggest you have handrails fitted to help you keep your balance. They can teach you exercises and strategies to help you avoid falls.

Bladder control

Urology and continence specialists can recommend treatment to help manage bladder problems.

If you're having problems emptying your bladder, you might have intermittent catheterisation. This involves putting a tube into the bladder to drain the pee.

This can be done intermittently then removed. Or it can be placed permanently either through the urethra or abdominal (stomach) wall.

People with MSA who have postural hypotension produce less pee during the day and more at night. There are medications that can help manage this if it becomes disruptive during the night and affects your sleep.

You might want to use a commode or urinal at your bedside for during the night. This might be useful if you have low blood pressure or are prone to falls.

Constipation

You should try to drink plenty fluids and eat a well balanced diet to try to avoid becoming constipated.

If you do experience constipation you'll be offered medication to take regularly. Suppositories can be helpful to avoid straining.

If you have episodes of diarrhoea (loose stools) this is likely to be caused by severe constipation. Speak to your doctor if this happens to you.

Less commonly, someone with MSA might have regular diarrhoea. Speak to your doctor if this happens to you.

Sexual problems

Erectile dysfunction (inability to get or maintain an erection) is often the first symptom of MSA. There's medication available to help with erectile dysfunction but it can cause problems with your blood pressure.

You might experience problems with your libido and sexual function.

The MSA Trust have more information about relationships and sex for people with MSA.

Dizziness

You might feel dizzy when you stand up or change position because your blood pressure falls quickly.

Sometimes this can be helped by drinking more fluids and eating more salt. Leg exercises that increase blood flow in your calves can help too. You should avoid sudden changes in position like standing up quickly.

If your blood pressure can't be controlled by these practical methods, you might be offered medication to help with this.

Communication and swallowing problems

You might see a speech and language therapist who'll try to help with your problems with speech and swallowing (dysphagia).

Together with a dietitian they might suggest changing the consistency of your food to make it easier to swallow.

They might be able to give you techniques you can use to make your voice clearer. They'll suggest communication aids or devices if they think they might help you.

You might be offered a feeding tube if you:

experience coughing or choking when eating or drinking
struggle to eat and drink enough to stay well

Eating problems

A dietitian will help advise you how to eat a healthy balanced diet including more food and liquids that are easy to swallow.

If there's a risk of malnutrition and dehydration, you might be offered a feeding tube.

Breathing problems

You might be referred to a respiratory team if you have breathing problems like sleep apnoea or stridor.

They might recommend overnight non invasive ventilation, like CPAP.

Palliative care

You can choose to have palliative care at any stage of MSA in addition to other treatments.

The aim of palliative care is to relieve pain and other symptoms alongside psychological, spiritual and social support.

You might receive palliative care:

at home
in a hospice or care home
as an outpatient in a hospital
in a hospital

Advance care planning

You might want to consider making plans for the future to help your family and health professionals plan your medical care.

This will be useful if you're unable to communicate later on because you're too ill.

You don't have to make these plans if you don't want to.

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