Myasthenia gravis

Muscle weakness that worsens with use and improves with rest. Treatable, and the breathing complication is an emergency.

What it is

Myasthenia gravis is an autoimmune condition in which antibodies block the signal between nerve and muscle. Around 15 in every 100,000 people in the UK have it.

The defining feature is fatigability: muscles work at first and weaken with repeated use, then recover with rest. So somebody may see clearly in the morning and have double vision by the evening, which leads to being disbelieved.

It is treatable, and most people do well. The situation that must not be missed is myasthenic crisis, where the breathing muscles weaken. That needs intensive care.

Signs you might notice

Drooping eyelids and double vision, often the first symptoms and often worse late in the day.

Difficulty chewing, especially towards the end of a meal. Slurred or nasal speech that worsens as you talk.

Difficulty swallowing, which is dysphagia and carries aspiration risk.

Weakness in arms, legs and neck that worsens with activity.

Breathlessness, which in myasthenia is a red flag rather than a symptom to monitor.

How it can affect day-to-day life

The fluctuation causes disbelief, from employers, from benefits assessors, and sometimes from families. Somebody genuinely can do a task at nine and not at four.

Medication timing is critical: pyridostigmine wears off and doses need to sit around meals so that chewing and swallowing are possible.

A great many common drugs worsen myasthenia, including some antibiotics, beta blockers and magnesium. Every new prescription needs checking against a myasthenia list.

Infection, heat, stress and surgery can all trigger a crisis.

Supporting someone well

Learn which drugs to avoid and carry the list. This prevents more crises than anything else.

Plan the day around energy: demanding activities early, rest built in before exhaustion.

Time medication around meals so swallowing is safest when eating.

Treat infections promptly, and take breathlessness seriously and immediately.

Carry an alert card and make sure the people around the person know what a crisis looks like.

In a service, Fiducia Together holds the avoid-list against the medication record, so a new prescription is checked against it rather than against somebody's memory.

Where to get help

A neurologist manages this. Ask for a specialist myasthenia clinic if symptoms are difficult to control.

Myaware run a helpline and produce the alert card and drug-avoidance list.

Increasing breathlessness, difficulty swallowing saliva, or a weak cough is a 999 call. Say myasthenic crisis.