Patient Comments: Post-Polio Syndrome - Symptoms

What were your symptoms associated with post-polio syndrome?

Comment from: pinecrone, 65-74 Female (Patient) Published: February 25

I am 70 and had polio when I was 3. Today I have pain in my legs and back, COPD, and arthritis everywhere. I have told doctors for years that I had polio. Since I was able to walk (a little), they said I was cured! I was sent to physical therapy where the process was more painful than I could bear. At 66 I had an orthopedic doctor confirm it was post-polio. Today I need a wheel chair and can only manage to walk across a room before it is too much. I resent that there are no doctors to help us. Drugs do not work. I've had them all. Life is much better without them. They do not help the pain.

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Comment from: Scitnor, 55-64 Male (Patient) Published: January 06

I contracted polio when I was (I think) 5 years old. I lost ability to walk. As I remember, my right leg gave out, and, as I recall it was painful to attempt to walk. This would have been somewhere during 1957 to 1959 years, I believe. My parents (still living) don't remember my having polio, but I remember having it, yet I'm not clear on what year/s I experienced polio. I recall taking the sugar cubes and in a short time, I was able to walk. Now however, at 63, my right leg gets numb when walking and/or standing and has been steadily getting worse. Today (1-4-16), I woke up to a numb right leg, tingling as though it's asleep and am unable to put any weight on it. Yet, I can bend/operate my right foot. Odd!

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Comment from: Eppy, 75 or over Male (Patient) Published: December 07

I had bulbar poliomyelitis in 1944 when I was 10 years old. I was hospitalized for 1 year. I had slow recovery and left sided body weakness. By age 21 I had full recovery with little vestigial symptoms. At age 75 in 2009, muscle weakness in arms and legs began. I developed COPD. Difficulty swallowing in 2014 caused aspirating pneumonia and MI (myocardial infarction). PEG (percutaneous endoscopic gastrostomy) feeding was set up, which lasted for one year. Present situation is, I have mild physical activity to prevent and delay muscle deterioration. Continual loss is inevitable. I am learning to cope.

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Comment from: Dixie, 65-74 Female (Patient) Published: December 01

I had polio at age 12, temporary paralysis of my neck only. I had full, total recovery, and was on ski team, swim team. Now at 73 and this has been going on undiagnosed for years; chest pain, terrible neck and shoulder pain, nervousness, trouble breathing, sleep apnea, can't concentrate, get flu-like symptoms a lot, terrible fatigue for years, and cannot even swim anymore. I am desperate for some treatment. I am angry that I have told my doctors all these symptoms and just now finally got diagnosed, because I asked them if I have post-polio syndrome. Finally one doctor said yes!

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Comment from: Linda G., 55-64 Female (Patient) Published: May 05

I have every symptom from the post-polio syndrome. I am 59 years old and contracted polio at the age of 18 months. Along with the normal symptoms, I have bouts of chronic costochondritis. I have so much shoulder, neck and chest pain which makes it very difficult to wear a bra. My breasts are very uneven from muscle mass damage. I am so tired of having to take pain medication to wear a bra that I'm willing to have my breast removed. I am seeing a surgeon on May 14th, 2015.

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Comment from: Greek, Female (Patient) Published: September 03

Choking, joint pain and depression became my biggest challenge 10 years ago. Despite my positive character, the post-polio syndrome (PPS) takes a toll on me and I feel overwhelmed that doctors know so little about it! I wish I knew doctors that do not see me as an experiment. I was only 8 months old in Greece when I came down with paralytic polio but I was determined to use 80% of my mobility. The fight these days is not only physical but emotional too!

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Patient Comments

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Post-Polio Syndrome - Treatment Question: What forms of treatment or therapy have you tried to improve muscle strength lost from post-polio syndrome?
Post-Polio Syndrome - Exercise Question: What types of exercise or physical therapy are helpful in managing symptoms associated with post-polio syndrome?

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