ALS Respiratory Support

✓Supports this

“Sudden shortness of breath needs immediate medical attention rather than a call to the MND team, because the cause may be something other than ALS/MND, such as a clot on the lung.”

Treats sudden shortness of breath as an emergency in its own right, separate from the gradual breathing changes of ALS/MND, and gives the reason: the cause may be something else, such as a clot on the lung. The same quote and locator carry this statement on the respiratory testing card.

If you develop sudden shortness of breath, it is important to seek immediate medical attention, as the cause could be something other than ALS, such as a blood clot in the lungs.

Shortness of Breath

✓Supports this

“Sudden shortness of breath needs immediate medical attention, not a call to the MND team, because the cause may be something other than ALS/MND, such as a clot on the lung.”

Treats sudden shortness of breath as an emergency in its own right, separate from the gradual breathing changes of ALS/MND, and gives the reason: the cause may be something else, such as a clot on the lung.

If you develop sudden shortness of breath, it is important to seek immediate medical attention, as the cause could be something other than ALS, such as a blood clot in the lungs.

Shortness of Breath

✓Supports this

“A chest infection that is not clearing, or feeling unusually unwell with your breathing, should be raised with the team promptly rather than saved for the next appointment.”

Says an infection should be seen about as soon as possible rather than left, and that the person's usual doctor stays involved alongside the ALS team.

If you get the flu, a cold, or an infection, it is especially important to see your doctor as soon as possible to get it cleared up.

Keep Your Primary Doctor

Used across the whole answer

!Qualifies this

“In ALS/MND the breathing problem is often a build-up of carbon dioxide from weak breathing muscles, not simply a shortage of oxygen.”

Agrees on the practical conclusion, that most people with ALS do not need extra oxygen and that a genuinely low oxygen level usually means a separate lung condition. It is less clear-cut on the mechanism: it says a weak diaphragm makes it harder both to take oxygen in and to breathe carbon dioxide out, rather than singling carbon dioxide out.

If you are experiencing shortness of breath, it is likely the result of a weakened diaphragm muscle.

Shortness of Breath

✓Supports this

“Extra oxygen is not part of routine breathing care in ALS/MND and is kept for particular circumstances.”

Says most people with ALS do not need supplemental oxygen, and names the exception as an oxygen level that is genuinely low, which usually comes from an underlying lung condition such as COPD or emphysema.

Most people living with ALS do not need supplemental oxygen.

Shortness of Breath

Further reading

A plain-language overview of breathing changes in ALS/MND and how they are supported