DEAR DR. GOTT: My husband was diagnosed with CMT (Charcot-Marie-Tooth). We have been told that there is no cure and that it is a genetic disorder. Do you know anything about recent studies to stop the progression of this disease or any research that has been done to restore the myelin sheath surrounding his nerves?
In addition, the braces on his legs are cumbersome and they hurt him. Do you have any suggestions for a different type of treatment that he might try? Thank you so much.
DEAR READER: Charcot-Marie-Tooth disease is a group of hereditary disorders that affect the nerves in the arms and legs. It is caused by a genetic mutation. It can result in damage directly to the nerves that serve the extremities, or it can damage the myelin sheath of these nerves. Myelin is a fatty substance that covers all nerves as a form of protection. Whether the nerve or the myelin is affected, the end result is the same: weaker, or sometimes absent, signals from the arms, hand, feet and legs to the brain and vice versa.
Symptoms typically first appear in the feet and lower legs during adolescence or early adulthood. As the disease progresses, symptoms may involve the thighs, arms and hands as well. Severity ranges widely, even among family members also affected.
Common symptoms include hammertoes, high foot arches, loss of muscle bulk in legs and feet, footdrop, frequent tripping or falling, numbness or decreased sensation in the feet and legs, awkward or higher-than-normal gait, decreased ability to run, and weakness of the feet, ankles and legs.
There is no cure for CMT; however, there are some treatments. Medication to control pain (an uncommon symptom) may be used. More commonly, physical and/or occupational therapy is advised. These may also be used in conjunction with orthopedic devices, such as leg and ankle braces or splints.
Physical therapy involves muscle stretching and strengthening and low-impact exercises. If started early and done regularly, therapy can effectively delay some nerve deterioration. Occupational therapy may be more beneficial for those who also have hand and arm involvement. Occupational therapy differs from physical therapy in that it is specifically designed to make normal daily activities easier.
For those with severe foot deformities, corrective surgery may be helpful.
Self-help options include daily stretching and exercising, wearing properly fitting, protective shoes, soaking and moisturizing the feet, keeping nails trimmed, and inspecting the feet daily for wounds (to prevent infection).
You may wish to visit the Charcot-Marie-Tooth Association’s website, www.cmtausa.org. There, you can find further information regarding the disorder and treatment, physicians familiar with the condition, support groups and more.
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