Post-polio syndrome is an illness defined by a collection of symptoms that generally occur at least 10-20 years after infection with the polio virus. The hallmark of post-polio syndrome is new muscular weakness. This may present as weakness in the arms, legs, or trunk or difficulty with swallowing, talking or breathing if the muscles that control these functions are affected. Other symptoms of post-polio syndrome include muscle pain, fatigue and cold intolerance. It is not uncommon for polio survivors to have new weakness in muscles that were previously believed to be unaffected by polio. This may be because they really weren’t sure which muscles were affected many years before, or because muscles were so mildly affected at first that doctors didn’t detect it on physical examination at the time of the polio virus infection.
Polio is a disease caused by an infection with the poliovirus. From the early 20th Century through the 1960’s in the United States, epidemics of polio affected many people. The creation of polio vaccines has practically eliminated polio in the United States, and most of the developed nations of the world. However, people in the U.S. and elsewhere who were infected by the virus before vaccines were developed can develop post-polio syndrome.
To understand post-polio syndrome, you need to understand what happens in polio. In a small number of cases of polio (less than 10%), the virus will attack the cells in the spinal cord and cause paralysis. However, many people who were infected by the poliovirus did not develop paralysis. Fortunately, many just had typical symptoms of an infection — fever, aching muscles, fatigue, etc. — that lasted a few days, and thereafter regained complete health.
Others may have had mild muscular weakness, so mild that neither they nor their doctor noted it. Along with patients who developed obvious weakness (paralysis), patients with milder weakness are at risk for getting post-polio syndrome decades later.
It’s not clear how many polio survivors will be affected by post-polio syndrome. A reasonable estimate is 60% of those who had significant paralysis during the initial illness. It’s also not clear why some polio survivors develop post-polio syndrome while others do not.
One theory is overuse of the nerves and muscles that remained working after the initial infection. For example, if some of the nerves and muscles that are necessary for leg strength are damaged, the remaining nerves and muscles of the legs need to work harder to compensate. After many years of having to work harder, these nerves and muscles become exhausted. Some of them even die. This then forces the nerves and muscles that are left to work even harder, and so a vicious cycle sets in.
Polio that affects the spinal cord usually destroys many of the motor neurons (nerve cells) that control the muscles of the body. During recovery from polio, you can’t build new nerve cells. However, you can create new connections between surviving nerve cells and muscles, so you can recover your muscle strength by “re-wiring” your nerve connections. This is an effective way for your nervous system to compensate for polio, but it may be temporary.
Normal aging likely also contributes to new weakness. Nervous system damaged by polio years earlier goes through a natural aging process that includes the loss of some strength.
In addition, as the years pass, nerve cells can be disabled or damaged by illness, injury, your own immune system or natural aging. Delicate connections between nerves and muscles can be lost during periods of inactivity. If you are already relying on a smaller number of nerve and muscle cells than is normal, this loss of other nerve cells over time might leave you more susceptible to weakness that you might not otherwise notice.
One theory for post-polio syndrome is that some of the poliovirus remains alive in the brain and spinal cord. This theory is controversial.
People usually are affected by post-polio syndrome during middle or late adult life, decades after they first developed polio, after a long period of stability. The new symptoms sometimes emerge after an illness or injury.
Major symptoms include muscle weakness, pain, fatigue and, in some cases, wasting (atrophy) of the muscles that were involved during the polio infection, typically the legs. Additional problems can include intolerance to heat or cold, and difficulty swallowing, talking, breathing or sleeping. The syndrome also can cause abnormal muscle contractions, such as quivering or spasms, in small segments of a muscle. Worsening disability may cause social and psychological problems.
There is no specific test that diagnoses post-polio syndrome. Instead, the diagnosis is made by confirming an old history of polio (based on history, physical examination and a muscle test called an electromyogram, or EMG). In addition to these, there needs to be a period of partial recovery after the initial illness and a long stable period without new symptoms (at least 10-20 years). Finally, other reasons why someone may be experiencing new symptoms need to be ruled out.
Your doctor will ask about your medical history, especially your history of polio. A neurological exam can identify muscle weakness and atrophy. An EMG can help to diagnose this disease. In this procedure, small needles are inserted into several areas of muscle. Of note, EMGs are often done in conjunction with another test called nerve conduction studies (NCS) which don’t typically use needles but instead have surface electrodes that deliver small amounts of electricity to test the nerves. Sometimes, muscle biopsies are ordered, although these tests provide only supporting evidence—not proof—of the diagnosis.
Post-polio syndrome worsens slowly over time.
In people who have a history of polio, there is no good way to prevent post-polio syndrome. Obviously, the way to prevent post-polio syndrome in children and adults who never had polio or the polio vaccine is to prevent polio itself through vaccination, when recommended by the doctor.
Specific treatment for post-polio syndrome includes a multi-disciplinary rehabilitation approach. Physical therapy may be used to increase muscle strength and endurance and to help with improving balance and preventing falls. Occupational therapists can address upper extremity problems, especially overuse injuries, as well as recommend adaptive equipment for your home and/or office. Speech and language pathologists evaluate and treat swallowing and speech problems. Orthotists can fit you for an up-to-date brace.
Neurologists and physiatrists are usually the physician specialists who care for people with post-polio syndrome. Physiatrists are doctors who specialize in Physical Medicine and Rehabilitation (PM&R) and can help to both establish the diagnosis and treat any symptoms. Both physiatrists and neurologists are often trained in performing EMG testing.
For treatment, these doctors may prescribe medications to help with pain and/or fatigue or perform injections. They may recommend sleep studies and prescribe treatments that help with breathing at night. They can write specific therapy orders, brace prescriptions and help coordinate the multi-disciplinary interventions. Complications that involve swallowing or breathing disturbances (such as sleep apnea) require specific treatments. Examples might include using different positions during meals, or an air-pressure mask and machine that can be used during sleep to support breathing. Counseling with a psychologist or vocational counselor can help with psychological or occupational adjustments. Support groups offer education, support and social opportunities.
When To Call a Professional
Call a health care professional if you have had polio, and notice changes in muscle strength, decreased endurance, muscle wasting or abnormal muscle twitching. Difficulties swallowing, breathing or sleeping also require medical attention.
Post-polio syndrome usually worsens slowly. With a combination of multi-disciplinary rehabilitation approaches and lifestyle modifications, people often can return to or approach their previous level of functioning. Post-polio syndrome does not usually cause symptoms that are as severe as the original polio illness.
Learn more about Post-Polio Syndrome
National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Post Polio Litaff, Association A.C
México City . 06100