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.
Breathing and sleep issues in those that have Post Polio Syndrome (and other similar neuro conditions such as ALS, MS, and muscular dystrophy
We do think it important that those with Post Polio Syndrome and other similar neuromuscular conditions get the proper testing, diagnosis, and treatment for their breathing and sleep issues.
- It has now been well documented by medical professionals that pulmonary function tests must be administered to a patient who is laying down as there is no gravity to assist diaphragm muscles. Testing sitting up does not give the proper readings for the physician to prescribe treatment.
- In a sleep test, the carbon dioxide levels exhaled must be tested as well as oxygen inhaled. Many with PPS have gotten carbon dioxide poisoning after being prescribed a Cipap instead of a Bipap as they did not have strength over time to exhale enough carbon dioxide. When oxygen was prescribed, the carbon dioxide levels rapidly increased in the tissues.
- In the California sleep tests administered to over 500 patients with a neuromuscular condition, it was found that over half needed a Bipap S/T or a VP which initiates a breath when the patient forgets to breath. This happens especially when the patient is overly fatigued.
- Most all sleep test labs have been reported by members of Post Polio Syndrome support groups to not have equipment to test the carbon dioxide levels exhaled and also not the equipment to use to test and establish a back-up breathing function.
- See below what is happening in California and a Symposium to create creditability on these issues that need adopted throughout the healthcare system.
- The Symposium is hosted by the Salk Institute on November 1, 2009 and we sure hope this will make an impact on the medical community on the special needs of those with neuromuscular conditions.
October's Capital Polio Association Meeting Held Tuesday October 20th 2009. For more information email capitalpolio@gmail.com mark.ravenscraft@gmail.com
