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Warning-sign checks

Myotonia congenita: 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. 1

    Is any of this happening now?

    Call 911

    Call emergency services for severe breathing difficulty, inability to swallow saliva, loss of consciousness, or a serious injury from a fall.

    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. 2

    Is any of this happening?

    Be seen today

    Seek urgent medical help for new or rapidly worsening swallowing difficulty, repeated choking, severe weakness, or symptoms after starting a new medicine.

    These are not usual everyday features of myotonia congenita and should be assessed promptly.

  3. 3

    Does any of this apply?

    Book an appointment

    Arrange a routine medical appointment if you have repeated muscle stiffness, trouble releasing your grip, falls after standing, or symptoms that improve with repeated movement.

    These features can have several causes and need proper assessment rather than self-diagnosis.

    If you already have myotonia congenita, seek routine follow-up when:

    • Stiffness is increasingly limiting work, school, exercise, or self-care
    • You are having falls or injuries
    • Weakness becomes persistent rather than temporary
    • Swallowing symptoms recur
    • You are considering pregnancy or genetic testing
    • You are planning surgery or anesthesia
    • A medicine is not helping or may be causing side effects

Every sign above is quoted from the sofidex article on Myotonia congenita. If you are not sure, err upward — it is always reasonable to be checked.