Multiple system atrophy (MSA): early signs, diagnosis and living with it

NHS inform describes MSA as a neurological condition affecting adults, caused by degeneration or shrinking of nerve cells in different parts of the brain. The NHS says nerves in the area controlling balance and movement become damaged and lost over time, for reasons not known. It has no connection to multiple sclerosis, NHS inform notes, and it is not caused by anything the person has done.

It is progressive: symptoms worsen over time, at different speeds. The NHS says MSA affects how long someone lives and can sometimes get worse quickly, and that most people eventually need help with daily living, though the type and timing of support vary.

The NHS lists bladder problems (needing to pass urine more often or being unable to), dizziness and faintness on standing, erectile dysfunction, slow, clumsy or unsteady movement, slurred speech, and stiff, tense muscles that may be painful. Other symptoms include feeling too hot or cold, trouble sleeping, noisy breathing, unintentional sighing and snoring, difficulty chewing or swallowing, constipation, and unpredictable laughing or crying. NHS inform adds tremor, slowness, balance and co-ordination problems, problems controlling sweating, a weak quiet voice, shoulder and neck pain, blurred vision, cold hands and feet, restless legs and nightmares.

The NHS says symptoms most often begin in people over 50 and rarely under 30; NHS inform says they often start between 50 and 60. It stresses these symptoms are very common and can be caused by many conditions, so having them does not definitely mean MSA, but a GP should check them.

The NHS says a GP will usually refer you to a neurologist, who may diagnose MSA based on symptoms, how long you have had them and how quickly they are worsening, after tests to investigate other causes. There is no specific test, and early on it can look like Parkinson's disease. NHS inform says a doctor will test reflexes and functions like bladder control and blood pressure and may arrange an MRI to detect loss of brain cells, and lists the features that make MSA more likely, including early falls and a poor response to levodopa.

It may take some time to get the diagnosis, NHS inform notes, because many neurological conditions look similar in the early stages. For older people and families, a diary of dizziness on standing, bladder symptoms, falls and sleep problems helps the specialist.

The NHS says treatment and support aim to manage symptoms and help you stay comfortable and independent for as long as possible, with a team creating a care plan: medicines for sleep problems or dizziness, speech therapy for swallowing and communication, and physiotherapy and occupational therapy to maintain fitness and strength and make daily life easier. NHS inform adds that movement medicines have limited benefit and can make blood pressure problems worse.

NHS inform describes specific measures. For dizziness on standing (postural hypotension), drinking more fluids and eating more salt, leg exercises that increase blood flow in the calves, avoiding sudden position changes, and medicines if these fail. For balance, physiotherapists and occupational therapists can suggest walking frames, shoes to reduce falls, handrails, and exercises and strategies. For bladder control, urology and continence specialists can advise, and intermittent catheterisation may be offered if emptying is a problem; NHS inform notes people with postural hypotension produce less urine in the day and more at night, so a bedside commode or urinal may help. For constipation, plenty of fluids, a balanced diet and regular medicines. Fluid and salt advice should come from your clinician.

NHS inform says a speech and language therapist and dietitian may suggest changing food consistency, techniques for clearer speech and communication aids, and a feeding tube may be offered if someone coughs or chokes when eating or drinking or cannot eat and drink enough. Breathing exercises may reduce the chance of aspiration pneumonia, a chest infection from inhaling food particles. It adds that people with breathing problems such as sleep apnoea or stridor may be referred to a respiratory team. Choking episodes, noisy breathing at night and repeated chest infections should be reported promptly.

The NHS says your care team can discuss how the condition may affect you and your family, and points to the MSA Trust, a charity providing information and support with a helpline, including support for carers and information on the emotional impact. NHS inform says the MSA Trust has dedicated MSA charity nurses. The NHS also points to social care and support options for help with day-to-day living. Because MSA can progress, early conversations about care preferences, legal arrangements and where care will be provided are helpful.