Limb-girdle muscular dystrophies: 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
Seek emergency help for severe difficulty breathing, blue or grey lips, choking that prevents breathing, sudden collapse, or fainting with chest pain or a racing or irregular heartbeat.
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 usual clinical team promptly if you notice:
New palpitations, ankle swelling, or reduced exercise tolerance
Morning headaches, daytime sleepiness, or breathlessness when lying flat
A weaker cough or repeated chest infections
Coughing during meals, food sticking, or unexplained weight loss
A clear change in walking, falls, pain, or joint stiffness
3
Does any of this apply?
Book an appointment
Arrange routine medical review if you develop new or gradually worsening weakness, repeated falls, difficulty climbing stairs, or trouble lifting your arms.
These symptoms have many possible causes and need assessment rather than self-diagnosis.
Every sign above is quoted from the sofidex article on Limb-girdle muscular dystrophies. If you are not sure, err upward — it is always reasonable to be checked.