Multiple Systems Atrophy prognosis

Currently, life expectency is an average of 6-9 years from first symptoms. It is 100% terminal.

Physical symptoms are very severe and a patient may progress very quickly and may need to use a walking aide within 3-4 years, a wheelchair within 5-6 years and be bed bound within 8 years. On average MSA patients survive only 7 – 10 years after symptoms are first noticed. Symptoms begin sometime after age 30. Most commonly people are diagnosed around age 50 – 55 but may have shown symptoms 5 or more years earlier. Earliest symptoms may be a sleep disorder known as REM behaviour disorder where REM sleep is interrupted by the body’s movements in acting out dreams. Other common early symptoms are bladder dysfunction, sexual dysfunction or inability to sweat.

For MSA patients, one common symptom is low blood pressure when standing (Neurogenic Orthostatic Hypotension) which leads to passing out and injury from falls. There are several drugs that are often prescribed to MSA patients for this symptom. Florinef, Midodrine and Droxidopa are the most common ones. Each of these work slightly differently in the body in order to cause an increase in blood pressure. There are also non-pharmaceutical interventions that can raise blood pressure such as quickly drinking 16 oz of water in the morning before getting out of bed and eating a high salt diet.

Diligent attention to symptom management such as interventions to keep blood pressure from going too low when standing, using a walking aide or wheelchair to prevent falls, staying well hydrated to prevent urinary tract infections, speech and swallowing therapy to avoid choking which might lead to lung infections (pneumonia), physical therapy and exercise to maintain mobility. These efforts can all contribute to increased quality of life and possibly increased life expectancy although there is very little scientific data available to support this.