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Warning-sign checks

Charcot-marie-tooth 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 severe breathing difficulty, blue or gray lips, inability to swallow saliva, loss of consciousness, or signs of stroke.

    These are not routine features of CMT and require immediate care.

    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 prompt medical assessment for weakness that develops suddenly or progresses much faster than usual.

    New one-sided weakness, facial drooping, severe dizziness, or difficulty speaking may indicate a condition other than CMT.

  3. 3

    Does any of this apply?

    Book an appointment

    Routine follow-up is used to track strength, sensation, balance, walking, pain, foot health, and the ability to complete daily activities.

    The frequency depends on age, subtype, symptoms, and the rate of change.

    Growing children may need repeated checks because braces, shoes, joints, and spinal alignment can change as they develop.

    A follow-up visit is appropriate if there is a gradual increase in falls, foot pain, hand difficulty, fatigue, numbness, or trouble using a brace.

    New wounds, poorly fitting footwear, or changes in work and mobility needs should also be discussed.

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