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Warning-sign checks

Creutzfeldt-jakob disease: 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 sudden severe confusion, stroke-like symptoms, serious breathing difficulty, prolonged or repeated seizures, major choking, or unresponsiveness.

    Sudden symptoms should not be assumed to be part of CJD.

    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

    Arrange a prompt medical assessment for rapidly worsening memory, behaviour, balance, coordination, speech, or vision.

    These symptoms do not necessarily mean CJD, but they need investigation because some possible causes are treatable.

    Seek urgent same-day help for:

    • New difficulty swallowing or repeated choking
    • Inability to drink enough fluid
    • Repeated falls or a significant injury
    • Fever, cough, breathing changes, or possible chest infection
    • Severe agitation or behaviour that creates an immediate safety risk
  3. 3

    Does any of this apply?

    Book an appointment

    During planned follow-up, report new falls, increasing muscle jerks, medication side effects, changes in eating or drinking, constipation, pain, sleep problems, or growing care needs.

    These issues may require changes to support or symptom management.

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