X-linked adult spinal muscular atrophy: when to get help
Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
1
Is any of this happening now?
Call 911
Call emergency services for severe breathing difficulty, prolonged choking, blue or grey lips, loss of consciousness, or inability to clear a blocked airway.
Sudden weakness on one side, facial drooping, or sudden speech difficulty is not a typical progression of this condition and should be treated as a possible stroke emergency.
Other emergency signs, for anyone
Someone who is struggling to breathe, gasping, choking, or cannot get words out
Someone who has chest pain, tightness or pressure lasting more than a few minutes
Someone who has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
Someone who is unconscious, or cannot be woken
Someone who is bleeding heavily and it will not stop with firm pressure
Someone who has had a seizure that will not stop, or does not wake up afterwards
Someone who has lips or skin that look pale, blue, grey or blotchy
Someone who you believe has taken an overdose or swallowed something poisonous
2
Is any of this happening?
Be seen today
Contact your healthcare team promptly if you notice:
New coughing or choking during meals
Unplanned weight loss or difficulty drinking enough
Increasing falls or loss of mobility
A weaker cough or repeated chest infections
Breathlessness when lying flat
Morning headaches or unusual daytime sleepiness
Seek urgent medical care if swallowing problems prevent you from taking fluids, or if you have a chest infection with worsening breathing.
3
Does any of this apply?
Book an appointment
Arrange a routine appointment if you develop gradually increasing weakness, muscle cramps, shaking, falls, or difficulty with stairs and daily activities.
These symptoms have many possible causes and need proper assessment rather than self-diagnosis.
Every sign above is quoted from the sofidex article on X-linked adult spinal muscular atrophy. If you are not sure, err upward — it is always reasonable to be checked.