Care and mobility considerations

The majority of people with myasthenia gravis are able to pursue a normal life once the diagnosis is made and drug treatment has been stabilised. Thymectomy is a major operation, but people having this surgery can be expected to have made a good postoperative recovery within 2 to 3 months.

Mild functional restriction

People in the following categories are likely to have no functional restrictions or mild restrictions only:-

• those in remission,
• with ocular symptoms only,
• with symptoms well controlled on medication (anticholinesterases drugs +/- stable regime of immunosuppressant drugs)
• under care of GP only or visit the hospital clinic infrequently.

They are unlikely to have a requirement for help with self-care or to be restricted in their ability to walk. Ocular problems are unlikely to cause significant visual impairment necessitating help in finding the way out of doors.

Moderate functional restriction

People in the following categories may have moderate functional restrictions:-

• recently diagnosed whose treatment regime is still being stabilised
• recovering from recent thymectomy
• attending hospital clinic on a regular basis for monitoring and modification of drug regimes, or having plasmapharesis or immunoglobulin injection

They may need some help with self-care and preparation of food. It is important to take into account the variability of symptoms during day, and the effects of fatigability. Although people with moderate functional restrictions are able to carry out a task initially, they may have difficulty in repeating or sustaining the activity. Self-care activities may take longer to complete than normal, especially as the day progresses.

Severe functional restriction

People in the following categories may have severe functional restrictions:-

• rapidly progressive disease not responding to standard drug treatments,
• recent hospital admission for deteriorating symptoms,
• need for artificial ventilation,
• long standing generalised disease,
• presence of muscle wasting.

People may have difficulty in dressing, washing, standing for prolonged periods, bending down, rising from a chair, using the toilet, climbing stairs and in moving around the house. They may need help in taking frequent doses of medication if manual dexterity is impaired. Walking may be restricted due to weakness of the lower limbs exacerbated, in some cases, by shortness of breath. People may use wheelchairs out of doors and in the home. Some people with severe lower limb weakness may be prone to falls.

It is unlikely that people with severe myasthenia gravis would require constant watching over to prevent a cholinergic or myasthenic crisis, since the onset is usually gradual over some hours.

Amended June 2008