The exact symptoms you experience may vary hugely from other people with CMT. This is because there are many different subtypes of CMT. Symptoms can also vary hugely, even within the same sub-type, for example between close family members. While some subtypes have specific symptoms, some symptoms are common to most types of CMT. These include wasting, weakness and reduced sensation starting in the feet/legs and eventually involving the hands/arms. Occasionally people develop no symptoms even though they carry the abnormal gene. Others may only get symptoms later in life, even in their 50s and 60s, despite having a type that ‘normally’ shows symptoms by the teenage years.

Early symptoms may include:

  • difficulty walking because of problems picking up the feet (foot drop), and high arches, although some people will have abnormally flat feet
  • weakness in the hand and forearms, although the feet are usually affected first
  • children may experience difficulty with running and general agility before any other noticeable symptoms – including being ‘clumsy’

Other symptoms can include:

  • some loss of feeling in the feet, lower legs, hands and forearms, although this is rarely troublesome
  • loss of fine control in the hands, making it difficult to write or do fiddly things such as doing up buttons.
  • Weakness in the hands causes difficulty with grip, making it difficult to open jars, for example
  • some muscle tremor
  • tiredness (fatigue) because of the extra effort needed to do daily activities
  • slight curve to the spine
  • increased difficulty walking – aids may be needed, such as orthoses and walking sticks.

Rare Symtoms

People with CMT can develop more severe symptoms, though this is rare for those with the commonest type. These can include:

  • severe weakness and instability in the legs and ankles, requiring the use of a wheelchair
  • severe weakness in the hands and arms, leading to major problems using the hands
  • a severe curve of the spine (scoliosis)
  • some difficulty breathing, particularly at night (sleep apnoea)
  • voice difficulties making speech quieter

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Last Updated: Tuesday 15th January, 2019