Facioscapulohumeral muscular dystrophy: 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 difficulty breathing, blue or grey lips, choking that does not clear, loss of consciousness, or another immediately life-threatening problem.
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
Seek prompt medical advice for:
New breathlessness, especially when lying flat
Morning headaches or marked daytime sleepiness
Repeated coughing or choking while eating
Sudden or rapidly worsening vision changes
A clear decline in walking or repeated falls
3
Does any of this apply?
Book an appointment
Arrange a routine appointment if you develop new or gradually worsening weakness, frequent tripping, shoulder-blade winging, or difficulty lifting your arms.
If you already have FSHD, report changes in walking, falls, pain, hearing, vision, sleep, swallowing, or ability to manage daily tasks.
Every sign above is quoted from the sofidex article on Facioscapulohumeral muscular dystrophy. If you are not sure, err upward — it is always reasonable to be checked.