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Three Doctors You Need to Meet

“I know what you have,” the neurologist said with certainty. “Really,” I responded with the ring of a question in my tone. No wonder. I spent years asking every physician I encountered in five different states about the progressive problem of weakness in my left arm, hand and both ankles.

“I’m sure,” Dr. Jay Berke asserted, countering my challenge, “but I’ll need to put you through some tests to prove it. You have Charcot Marie Tooth disease. Ever heard of it?”

“Never. It sounds like something for a dentist, “ I opined.

But, no! According to the CMT association’s website, “Charcot-Marie-Tooth, or CMT, is the most commonly inherited neurological disorder, affecting approximately 150,000 Americans. CMT is found world-wide in all races and ethnic groups. It was discovered in 1886 by three physicians, Jean-Martin-Charcot, Pierre Marie, and Howard Henry Tooth.”

Charcot Marie Tooth is one of 40 diseases covered by the Muscular Dystrophy Association. However, unlike muscular dystrophy, in which the defect is in the muscles, the defect for this disorder is in the nerves that control or communicate to the muscles. CMT is not muscular dystrophy, but muscular atrophy.

Charcot Marie Tooth disease, for which there is no cure, is categorized by several types. Researchers cite Type 1A as the most common form. They suggest that at least 60 percent with the disease have this type of CMT, but its exact cause it not known.

Type 1X is the second most form of CMT. It typically develops in adolescence or childhood, mainly affecting boys more severely than girls. Males with Type IX CMT do not pass the disease to their sons, but to all of their daughters.

My neurologist explained the characteristic CMT symptoms I expressed. 1) a high arched foot--one of the first signs of the disorder, 2) developing hammer toes, 3) muscle weakness in the upper legs, 4) increasing weakening in the left arm, 5) dexterity problems with buttoning clothing and grasping zipper pulls, and 6) tingling and burning sensations in my hands and feet.

Tests for CMT proved the diagnosis to be correct. Dr. Berke was the first physician I met who was informed about the strange disease named after three researchers—a disease discovered and named in the late 19th century that remains a secret to many in medicine today.

Dr. Jay Berke introduced me to Drs. Charcot, Marie, and Tooth, three doctors I needed to know. Today the disease they researched is said to affect one in every 2500 people in the United States. But, since few doctors and patients are aware of this disease, I suspect thousands more have Charcot Marie Tooth. They just need to know.

Dr. Barbee is a minister and educator. He has served churches as pastor, been consultant to individuals, businesses and Fortune 500 corporations, and professor in the humanities, management and organizational studies with five colleges and universities. He holds the PhD in Human Resource Development.

infocite@yahoo.com

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