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Living with CMT: A Guide for Patients and Families

The peripheral nervous system encompasses the nerves outside the brain and spinal cord. It’s vulnerable to damage from uncontrolled diabetes and injuries, which can cause uncomfortable symptoms like numbness and tingling.

Living with peripheral neuropathy or diabetes puts you at risk for various health issues, including Charcot-Marie-Tooth (CMT) disease. Without treatment, CMT can lead to permanent bone damage and deformity that affect how you walk.

If you're living with CMT, Dr. Jefferey E. McAlister and the Phoenix Foot and Ankle Institute have the tools, resources, and treatments to help. Dr. McAlister provides relief through conservative measures in many cases, but surgery may be necessary in some.

What is Charcot-Marie-Tooth disease?

Charcot-Marie-Tooth disease is a progressive genetic condition affecting the peripheral nerves that aid muscle function and movement. You inherit the disease from one or both of your parents.

CMT affects the peripheral nervous system, which includes all the nerves outside of the spinal cord and brain. Symptoms often begin in childhood or teen years and develop over time into adulthood.

The symptoms of CMT usually involve both motor and sensory problems. People living with CMT have trouble moving their legs, feet, and ankles and feeling sensations in the feet.

Other issues associated with CMT include hammertoes, gait trouble, repeated ankle sprains, and muscle atrophy and weakness.

Diagnosing CMT

To get a true CMT diagnosis, you have to see a specialist like Dr. McAlister. You can't self-diagnose the condition because so many other issues mimic its symptoms.

If you suspect a problem or have nerve damage from neuropathy or diabetes, it's crucial to get an evaluation. Dr. McAlister uses the following tools to diagnose CMT:

The diagnosis is vital to progressing with treatment for you or your family member. Once we have the diagnosis, Dr. McAlister discusses the treatment options.

Treatments that control CMT

When you or someone in your family has CMT, it's crucial to know your treatment options. Dr. McAlister carefully evaluates your type of CMT and medical history to determine the best treatment route for your needs.

Various treatments are available, depending on your symptoms and the progress of the condition. A few of the therapies you can expect throughout the disease cycle include:

Medications

Nerve damage from CMT often leads to chronic pain in the legs and feet, which is sometimes unbearable. Pain relief medications are necessary for people living with CMT with severe pain not relieved by over-the-counter medications.

Physical therapy

Physical therapy is vital for families living with CMT. Caring for someone who can't get around in the later stages of the condition is difficult, which is where a physical therapist can help.

The goal of physical therapy is to help you maintain your independence and mobility by providing strengthening exercises and flexibility training. Stretching and assistive devices also help to keep you mobile.

Casting/bracing

Casting and bracing are necessary to stabilize the affected foot and ankle and provide structure to keep the bones from deforming. They also help with gait issues and foot drop due to nerve damage.

Surgery

If nonsurgical treatments haven't stopped the damage from CMT, surgery may be necessary for you or your family member. During surgery, Dr. McAlister realigns the bones in the foot to assist with shoewear problems and mobility.

What is the outlook of CMT?

CMT is a condition that slowly worsens over time. Treatments can help slow the progression, but don't stop it completely. Living with CMT means you have to stay vigilant with treatments and your health.

Unfortunately, the symptoms of CMT may worsen over time, even if you follow every instruction and treatment protocol. It's essential to find support through family, friends, or specific CMT support groups to cope with the condition.

Lifestyle tips to live with CMT

The key to living with CMT is to recognize the need for help, follow your treatment plan, and avoid overstimulation of your nervous system through medications and alcohol. Dr. McAlister may also recommend some other lifestyle tips to cope with the condition, including:

You should also take your medications as we prescribe them and contact us with new or worsening symptoms. Although the disease progresses, taking the proper steps may control your symptoms and prevent serious complications.

Call Phoenix Foot and Ankle Institute today to schedule a CMT treatment appointment, or request a consultation on our website.

 

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