Charcot-Marie-Tooth Disease (CMT) in Grand Rapids, Michigan

Charcot-Marie-Tooth disease (CMT) is a group of inherited neurological disorders that affect the peripheral nervous system—the network of nerves outside the brain and spinal cord. These nerves help you move your muscles and feel sensations in areas like your hands and feet. When these nerves are damaged, it leads to a type of nerve disorder called a peripheral neuropathy.

In the Grand Rapids area, people living with CMT are often cared for through neurology and rehabilitation services at major health systems such as Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, Metro Health – University of Michigan Health, and Mercy Health. Local resources like the Kent County Health Department and Grand Rapids Public Health can also help connect families with specialists and support services.

How the Peripheral Nervous System Works

The central nervous system includes the brain and spinal cord. All the nerves that branch out from the spinal cord to the rest of the body form the peripheral nervous system. These nerves have two main jobs:

  • Motor function: Carry signals from the brain and spinal cord to muscles, telling them when to contract and relax (so you can walk, grip, and move).
  • Sensory function: Carry information from the skin, muscles, and joints back to the brain (such as touch, pain, temperature, and position).

The basic working unit of the nervous system is the nerve cell (neuron). Long nerve fibers called axons carry electrical signals along the nerve, much like wires in an electrical cable. These axons are wrapped in an insulating layer called myelin, which helps signals travel quickly and efficiently.

In Charcot-Marie-Tooth disease:

  • Some types damage the myelin sheath (called demyelinating neuropathies).
  • Other types mainly damage the axon itself (called axonal neuropathies).

Both problems interfere with normal nerve signaling, leading to weakness, muscle wasting, and changes in sensation.

What Happens in CMT?

In people with CMT, the nerves that control the arms and legs gradually stop working as well as they should. Over time, this leads to:

  • Weakness and wasting of the muscles, especially in the feet, lower legs, hands, and forearms
  • Difficulty with walking, balance, and fine hand movements

CMT is progressive, meaning symptoms usually worsen slowly over many years. However, how fast the disease progresses and how severely someone is affected can vary widely—even within the same family.

In milder cases, someone in Grand Rapids might only need supportive shoes or ankle braces to stay active through our long Michigan winters. In more severe cases, people may need walking aids or even a wheelchair to move around safely, especially on icy sidewalks and snowy conditions common in West Michigan.

Who Gets CMT and When Do Symptoms Start?

CMT is one of the most common inherited neurological disorders, affecting about 1 in 2,500 Americans. Because it is genetic, it tends to run in families.

  • Symptoms usually begin in childhood or the teenage years, although some people are not diagnosed until adulthood.
  • The legs and feet are usually affected first, followed later by the hands and arms.

Symptoms of Charcot-Marie-Tooth Disease

Common symptoms of CMT include:

  • Ankle weakness, often with the ankle “rolling over” easily (frequent sprains can be an early sign)
  • High foot arches (pes cavus) and clawed toes
  • High-stepping gait and “slapping” of the feet on the floor while walking
  • Muscle wasting in the lower legs (“inverted champagne bottle” appearance) and later in the hands and forearms
  • Weak handgrip, making it hard to:
    • Open screw-top jars
    • Turn faucets or door handles
    • Button clothing or handle small objects
  • Poor balance and occasional falls, which can be more dangerous in icy Michigan winters
  • Loss of sensation in the feet and hands, such as reduced ability to feel:
    • Pain
    • Temperature
    • Light touch

Because of reduced sensation, people in Grand Rapids with CMT need to be especially careful about foot care, particularly in cold weather when frostbite risk is higher and injuries may go unnoticed.

Types and Causes of CMT

CMT is caused by changes (mutations) in specific genes that are important for nerve structure and function. It is the most common inherited peripheral neuropathy, and it can follow several different inheritance patterns.

Major Inheritance Patterns

  1. Autosomal Dominant

    • Only one copy of the altered gene (from either parent) is needed to have CMT.
    • If a parent has autosomal dominant CMT, each child has a 50% chance of inheriting the condition.

  2. Autosomal Recessive

    • A person must inherit two copies of the altered gene—one from each parent—to develop CMT.
    • Parents who each carry one copy usually do not have symptoms (they are carriers).
    • When both parents are carriers, each child has:
      • 25% chance of having CMT
      • 50% chance of being a carrier
      • 25% chance of not having the gene change at all

  3. X-linked

    • The altered gene is located on the X chromosome, which helps determine a baby’s sex.
    • Males (who have one X and one Y chromosome) are usually more severely affected.
    • Females (who have two X chromosomes) may have mild symptoms or be unaffected carriers.
    • A man with X-linked CMT:
      • Will pass the gene to all his daughters (they will be carriers or may have mild symptoms)
      • Will not pass the gene to his sons (no male-to-male transmission)

Examples of CMT Subtypes

Some of the more common genetic causes of CMT include:

  • CMT Type 1A – a duplicated gene on chromosome 17
  • CMT Type 1B – a genetic change on chromosome 1
  • CMT Type 1C – a genetic change on chromosome 16
  • CMT X-linked – a genetic change on the X chromosome
  • CMT Type 2A – a genetic change on chromosome 1
  • CMT Type 2B – a genetic change on chromosome 3
  • CMT Type 2C – a genetic change on chromosome 12
  • CMT Type 2D – a genetic change on chromosome 7

Researchers—including teams across Michigan and the broader Great Lakes region—continue to discover new genes and variants that cause less common forms of CMT.

How CMT Is Diagnosed in Grand Rapids

If you or your child have symptoms such as frequent ankle sprains, high arches, or unexplained weakness, your primary care provider in Grand Rapids may refer you to a neurologist at a local health system (Corewell Health, Trinity Health, Metro Health, or Mercy Health).

Diagnosis typically includes:

1. Physical and Neurologic Examination

A neurologist will:

  • Check muscle strength, especially in the feet, legs, hands, and arms
  • Test reflexes (such as the ankle jerk reflex), which are often reduced or absent in CMT
  • Assess sensation (touch, pain, temperature, vibration)
  • Observe gait and balance

Common findings include:

  • Loss of muscle stretch reflexes, especially at the ankles
  • Weakness with:
    • Lifting the front of the foot (ankle dorsiflexion)
    • Moving the thumb away from the hand (thumb abduction)

2. Nerve Conduction Studies (NCS) and Electromyography (EMG)

These tests measure how well and how fast electrical signals travel through the peripheral nerves:

  • In demyelinating CMT, nerve conduction is slower than normal.
  • In axonal CMT, the size (amplitude) of nerve responses is reduced, even if speed is less affected.

These tests are commonly available at neurology and neurodiagnostic labs across Grand Rapids.

3. Genetic Testing

Genetic testing can:

  • Identify the specific gene change causing CMT
  • Confirm the diagnosis
  • Help determine the type of CMT and guide family planning

For example, CMT Type 1A can often be diagnosed with a test called a chromosome microarray or targeted gene analysis.

Genetic testing may be ordered through:

  • Hospital-based genetics clinics (e.g., Corewell Health or Metro Health)
  • Regional clinical genetics services in Michigan

4. Nerve or Muscle Biopsy (Rarely Needed)

In a small number of cases, a doctor may recommend removing a tiny sample of nerve or muscle tissue for examination under a microscope. This is now less common because modern genetic testing often provides enough information without a biopsy.

Genetic Counseling for Families in Grand Rapids

If CMT runs in your family or you have been diagnosed yourself, speaking with a genetic counselor can be very helpful. Genetic counselors are trained in both genetics and counseling and can:

  • Explain how CMT is inherited
  • Discuss your personal and family risk
  • Review genetic testing options for you and your relatives
  • Help you understand what a diagnosis means for:
    • Your child’s health and development
    • Lifestyle, work, and future planning
    • Pregnancy and family planning decisions

In Grand Rapids, your primary care provider or neurologist can refer you to:

  • Hospital-based genetic counseling services
  • The Genetic Support Network of Michigan
  • Regional clinical genetics programs serving West Michigan

Counselors provide support that is sensitive to your family’s culture, values, and beliefs.

Treatment and Management of CMT in Grand Rapids

There is currently no cure for Charcot-Marie-Tooth disease. However, many treatments can help manage symptoms, maintain mobility, and improve quality of life. A multidisciplinary care team—often available through Grand Rapids health systems—may include neurologists, physiatrists (rehabilitation doctors), physical therapists, occupational therapists, and orthotists.

Common Treatment Options

  • Leg and ankle braces (orthotics):

    • Help support weak ankles
    • Reduce the risk of rolling or spraining the ankle
    • Improve walking, especially on uneven or icy surfaces common in Michigan

  • Specially designed orthopedic shoes:

    • Provide extra support and stability
    • Help accommodate high arches or foot deformities

  • Thumb splints or hand supports:

    • Assist with weak grip and fine motor tasks
    • Make daily activities like writing or using tools easier

  • Physical therapy:

    • Focuses on muscle strength training, balance, and coordination
    • Helps maintain mobility and reduce falls
    • Can tailor exercises for indoor activity during cold Grand Rapids winters and safe outdoor activity in warmer months

  • Regular stretching:

    • Helps prevent joint stiffness and contractures
    • Maintains flexibility in the feet, ankles, and hands

  • Regular, moderate, low-impact exercise:

    • Activities like swimming, cycling, or using an elliptical machine are often recommended
    • Low-impact exercise is easier on weakened muscles and joints
    • Many Grand Rapids fitness centers and community pools offer accessible programs

  • Occupational therapy:

    • Teaches strategies and recommends tools to make daily tasks easier (e.g., jar openers, adapted utensils, bathroom safety equipment)
    • Assists with workplace and school accommodations

  • Orthopedic surgery (when needed):

    • May correct severe foot deformities (such as high arches or claw toes)
    • Can improve function, reduce pain, and make bracing more effective

Because ice, snow, and cold temperatures in West Michigan can increase the risk of falls and foot injuries, your care team may also discuss:

  • Choosing proper winter footwear with good traction
  • Using walking aids (like canes or trekking poles) outdoors
  • Checking feet daily for cuts, blisters, or pressure areas—especially when sensation is reduced

Living with CMT in Grand Rapids: Local and National Support

Living with a chronic condition like CMT can be challenging, but you are not alone. In Grand Rapids and across Michigan, there are resources that can provide information, advocacy, and community.

Support and Information Resources

  • Genetic Support Network of Michigan (GSNM)
    Offers education, support, and advocacy for individuals and families affected by genetic conditions, including CMT.

  • Charcot-Marie-Tooth Association (CMTA) – United States
    Provides up-to-date information on research, treatment, and support groups. They can connect Grand Rapids residents with others living with CMT across Michigan and nationwide.

  • Local Neurology and Rehabilitation Clinics

    • Corewell Health (Spectrum Health) Neurology and Rehabilitation
    • Trinity Health Grand Rapids Neurology
    • Metro Health – University of Michigan Health Neurology
    • Mercy Health neurology and rehab services

  • Public Health and Community Resources

    • Kent County Health Department and Grand Rapids Public Health can help connect you with:
      • Chronic disease management programs
      • Disability and mobility resources
      • Community fitness and wellness programs suitable for people with limited mobility

Ask your Grand Rapids primary care physician or neurologist for referrals to these services and for help coordinating your care.

Key Points About Charcot-Marie-Tooth Disease

  • CMT affects the peripheral nervous system, which controls movement and sensation in the arms and legs.
  • It is the most common inherited condition affecting peripheral nerves.
  • Symptoms usually begin in childhood or adolescence and often start in the legs and feet.
  • Common symptoms include ankle weakness, high arches, foot deformities, balance problems, and progressive muscle wasting in the legs and hands.
  • CMT can be inherited in autosomal dominant, autosomal recessive, or X-linked patterns.
  • There is no cure, but treatments such as bracing, physical and occupational therapy, orthopedic shoes, exercise, and sometimes surgery can significantly improve function and quality of life.
  • In Grand Rapids, Michigan, comprehensive care is available through major health systems, genetic counseling services, and support organizations that understand the unique challenges of living with CMT in a Great Lakes climate.

If you are concerned about symptoms of CMT in yourself or a family member, speak with your Grand Rapids primary care provider or request a referral to a neurologist or genetic counselor for further evaluation. Early diagnosis and supportive care can help you stay as active and independent as possible.