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. In addition there may be weakness in the hand and forearms, although the feet are usually affected first. In children difficulty with running and general agility may be seen 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) is often reported because of the extra effort needed to do daily activities. People with CMT may have a slight curve to the spine. Over time increased difficulty walking – aids may be needed, such as orthoses and walking sticks. Problems with hips or knees. Hearing difficulties do happen in certain sub types but are usually mild and coming on later in life.
Severe/ Less common
Severe weakness and instability in the legs and ankles, requiring the use of a wheelchair or severe weakness in the hands and arms, leading to major problems using the hands. A more severe curve of the spine (scoliosis). Breathing difficulties, particularly at night (sleep apnoea) or difficulties with the voice, making it much quieter.
This information is provided by CMT UK, for more detailed information or support please visit the CMT United Kingdom Website ‘Together we are stronger’.