CMT Symptom Checklist

How to read this list

Everyone with CMT is different. Symptoms range widely, and how quickly they show up depends partly on your subtype. Use the groups below to organize what you have noticed, not to reach conclusions on your own.

For each item, it helps to note whether it is not present, occasional, or frequent and ongoing, and when you first noticed it. You do not need to have every symptom, or even most of them.

Foot and leg symptoms

• High arches (pes cavus), feet that curve upward more than usual
• Foot drop, trouble lifting the front of the foot, causing a slapping or tripping gait
• Hammer toes or other toes that curl or bend at the middle joint
• Ankle instability
• Frequent ankle sprains
• Trouble walking on uneven ground
• Trouble climbing stairs
• Lower-leg muscle wasting, sometimes an inverted champagne bottle shape
• Cold feet or lower legs, even in warm weather
• Calluses or pressure sores on unusual parts of the foot

Hand and arm symptoms

• Weakness in the hands
• Trouble with fine motor tasks
• Trouble buttoning clothes
• Trouble turning keys
• Trouble opening jars
• Reduced grip strength
• Dropping objects more than usual
• Hand muscle wasting, the small muscles between the fingers looking flattened
• A mild tremor in the hands or arms
• Trouble typing, writing, or playing an instrument

Sensation and balance

• Numbness or reduced feeling in the feet or lower legs
• Numbness or reduced feeling in the hands or forearms
• Tingling or a pins and needles feeling
• Reduced ability to feel heat or cold in affected areas
• Reduced ability to feel pain, which matters for injury prevention
• Loss of proprioception, less sense of where your limbs are without looking
• Balance problems, especially on uneven surfaces
• Trouble balancing in low light or in the dark
• A high-stepping (steppage) gait, lifting the knees higher to clear the foot
• Needing braces or AFOs to walk safely

Fatigue and other symptoms

• Fatigue when walking, from compensating for weakness and balance
• General fatigue, since extra effort to move and stay steady adds up
• Scoliosis, a curve of the spine, more common when symptoms start in childhood
• Hip dysplasia, where the hip socket does not fully cover the top of the thigh bone
• Hearing loss, reported in some subtypes
• Breathing difficulties, which are rare but should be raised with a clinician promptly
• Swallowing difficulties, which are also rare
• Chronic pain in the feet
• Chronic pain in the legs
• Chronic pain in the back

A note on pain

CMT is often described as a motor and sensory neuropathy, a disease of the nerves that control movement and carry sensation. Even so, many people report chronic pain, especially in the feet, legs, and back.

Pain is a legitimate and important part of CMT care. If it is affecting your daily life, our guide to pain management covers options worth discussing with your clinician.

Bringing this to your appointment

Go through the list before your visit and mark each item as not present, occasional, or frequent and ongoing. Note when you first noticed each one and whether it has changed recently.

Bring the checklist with you so your clinician can see the full arc of your symptoms. Ask which ones to watch most closely given your specific subtype and history.

A neurologist or a neuromuscular specialist, a neurologist with extra training in diseases of the muscles and peripheral nerves, is best placed to guide your care. If you do not yet have one, your primary care provider can refer you.

Only a clinician can diagnose CMT

This checklist is a communication tool, not a medical test. No combination of symptoms here confirms or rules out CMT, and no checklist can replace a full clinical evaluation.

That evaluation may include nerve conduction studies, which measure how fast electrical signals travel through your nerves, electromyography (EMG), a test of electrical activity in muscles, and genetic testing. If you have concerns about any symptom above, bring it to a qualified clinician.

Next steps

If you are newly diagnosed or just want to understand more, our overview of CMT types and subtypes explains how CMT works and why symptoms vary so much between individuals.

You can also join the GRIN Registry, HNF's research registry. Every person who enrolls helps researchers understand the full range of how CMT presents and moves the science toward treatments and a cure.