What is post-polio syndrome?

By: Dr. Gott, The Dickinson Press

Dear Dr. Gott: About 20 years ago, I started experiencing leg aches and generalized fatigue. These symptoms almost imperceptibly but inexorably have gotten worse, to the point where my legs ache all the time. I have no endurance for walking, my knees are weak, and I have to hold onto something when going up or down stairs.

Over the years, I have sought medical help many times and have seen various specialists who have conducted tests and done blood work. They have no answers for me.

When I was 21, I had polio (I am now 60), and research on the Internet led me to the conclusion I have post-polio syndrome. However, the last neurologist I saw six months ago said she had never heard of such a thing, and no specialist has made a connection between the polio in my medical record and my current problems. Where should I go from here?

Dear Reader: To another neurologist. The National Center for Health Statistics indicates almost 450,000 polio survivors in the United States may be at risk for the condition. In fact, 25 percent to 50 percent of those previously diagnosed with polio will ultimately have some degree of post-polio syndrome (PPS) later in life.

PPS is a condition that affects polio survivors and presents 15 or more years following recovery from an attack of the polio virus. Research reveals it to be a slowly progressing condition marked by periods of stability, followed by a reduction in one’s ability to perform daily functions previously taken for granted.

Symptoms may include muscular and general fatigue, muscle atrophy, advancing muscle weakness, increased skeletal deformities (such as scoliosis) and pain from joint degeneration. The severity of disability following the original attack will commonly determine the severity of PPS. That is to say, mild symptoms the first time around will result in mild symptoms the second time. More severe symptoms the first time around will present similarly the second time.

The criteria for diagnosis of PPS include prior paralytic poliomyelitis with evidence of motor-neuron loss; residual weakness; nerve damage as documented by electromyography; partial or complete functional recovery after the acute virus, followed by a period of 15 or more years of stable neuromuscular function with or without gradual onset of new muscle weakness; muscle or joint pain; and muscle atrophy. Symptoms remain for at least one year, and other neuromuscular disorders with similar symptoms are ruled out.

Research has not been promising. Scientists have concentrated on a number of medications that have failed to provide positive results. Despite this, there are recommended management strategies. Exercise with caution, and only under the direction of a qualified therapist. Avoid activities that cause pain or fatigue lasting longer than 10 minutes. Get adequate sleep, eat healthful meals, discontinue cigarette smoking, and take over-the-counter anti-inflammatory medications for pain management. Participate in support groups or counseling.

Ask your local hospital or healthcare facility for the name of an appropriate specialist in your area. Affiliate with a physician experienced in treating neuromuscular disorders. Doctor shop until you find someone who can work with you.

To provide related information, I am sending you a copy of my Health Report “Choosing a Physician.” Other readers who would like a copy should send a self-addressed stamped No. 10 envelope and a check or money order for $2 to Newsletter, P.O. Box 167, Wickliffe, OH 44092. Be sure to mention the title.