Multiple system atrophy (MSA)

Multiple system atrophy (MSA) is a neurological condition that affects adults. It happens when nerve cells in different parts of the brain are damaged (this is called degeneration) or shrink (this is called atrophy).

The symptoms of multiple system atrophy (MSA) are different for everyone who has it. They often start between the ages of 50 and 60, but they can begin at any time from the age of 30.

You're likely to have problems with muscle control or balance, like those seen in Parkinson's disease or Ataxia. MSA is a progressive disease, which means the symptoms get worse 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

Doctors don't yet know what causes multiple system atrophy (MSA). It's not thought to be inherited, so it isn't something that usually runs in families.

When someone develops MSA, it appears to happen at random. It isn't caused by anything the person has done. MSA also has no connection to multiple sclerosis (MS).

Researchers are still looking into the possible causes of MSA.

Many neurological conditions look alike in the early stages, so it can take some time to get a diagnosis of multiple system atrophy (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.

There isn't a cure for multiple system atrophy (MSA), and there isn't a way of slowing its progress. As symptoms get worse, you might need help managing day to day life.

The MSA Trust website has information and support about living with MSA. The charity also has dedicated MSA nurses who can help support you.

Treatment of MSA means a mix of medicine, specialist equipment and therapists who work on specific symptoms. It might take time to find the combination that works best for you.

You might be prescribed medicine for the stiffness and slowness that MSA causes. The benefits are limited, and these medicines can make blood pressure problems worse.

A physiotherapist can give you regular exercises to do. These can strengthen your muscles and stop your joints from stiffening. The physiotherapist will also think about whether any equipment would help, like a walking frame or shoes that reduce your risk of falls.

You might be taught breathing exercises to lower the chance of aspiration pneumonia when you eat. That's a chest infection caused by breathing particles of food into your lungs.

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

Urology and continence specialists can recommend treatment for bladder problems. If you have trouble emptying your bladder, you might have intermittent catheterisation. A tube is put into the bladder to drain the pee. This can be done on and off, with the tube removed each time. Or the tube can be placed permanently, either through the urethra or through the abdominal (stomach) wall.

People with MSA who have postural hypotension make less pee during the day and more at night. There are medicines that can help if this becomes disruptive and affects your sleep. You might also want a commode or urinal beside your bed for the night, which can be useful if you have low blood pressure or tend to fall.

Try to drink plenty of fluids and eat a well balanced diet, so you don't become constipated. If you do get constipation, you'll be offered medicine to take regularly. Suppositories can help you avoid straining.

Episodes of diarrhoea (loose stools) are likely to be caused by severe constipation. Speak to your doctor if this happens to you. Less commonly, someone with MSA has regular diarrhoea. Speak to your doctor if this happens to you too.

Erectile dysfunction (inability to get or keep an erection) is often the first symptom of MSA. There's medicine for it, but it can cause problems with your blood pressure. You might also have problems with your libido and sexual function. The MSA Trust has more information on relationships, sex and MSA.

You might feel dizzy when you stand up or change position, because your blood pressure falls quickly. Sometimes drinking more fluids and eating more salt can help. Leg exercises that increase blood flow in your calves can help too. Avoid sudden changes in position, like standing up quickly. If these practical methods can't control your blood pressure, you might be offered medicine for it.

Read more about living with postural hypotension (dizziness)

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 so it's easier to swallow. They might give you techniques to make your voice clearer, and they'll suggest communication aids or devices if they think these would help.

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

A dietitian will advise you on eating a healthy balanced diet that includes 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.

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.

With multiple system atrophy (MSA), you can choose to have palliative care at any stage, alongside your other treatments.

The aim of palliative care is to relieve pain and other symptoms, and to give you 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