Post Polio Syndrome

I am 77 y/o male. I remember having a spinal tap but it came back negative. (Oops) It was probably just before the vaccine. I got better and moved on. I was misdiagnosed as Parkinsons for nearly 10years. Fortunately, In the course of changing neurologist PPS was skillfully diagnosed on an EMG. (I don't have to take that medicine anymore.) I have always been active, running, cycling, etc. I am now where walking is very difficult. I am very discouraged with P.T. What's the point? Scooter shopping is next. I'm not excited.

Hello @carlwade and welcome to the Post Polio Syndrome support group on Mayo Connect. Your journey to obtain a correct diagnosis has certainly been a long one. I commend you on your persistence. Do you know what age you were when you had polio?

Are there any other specialists who might be able to treat you at this point?

Do you have any suggestions about constipation. It keeps getting worse. My gut has come to a stop.

Hello @carlwade,

In the Digestive Health Support Group, we have many discussions on constipation. Here is a link to many of those discussions,
https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/?search=constipation&index=discussions
Also in the Parkinson's support group, there are many discussions about constipation. Here is a link to those discussions,
https://connect.mayoclinic.org/group/parkinsons-disease/?search=Constipation#discussion-listview
Has your doctor offered you any suggestions for this problem? Often a referral to a pelvic floor therapist can also be helpful

I had polio in 1949 when I was 9 months old. I was completely paralyzed but ultimately recovered. I was in braces until 7 years old. My mother had nurses' training at Bryn Mawr and was able to take care of me with help from the National Foundation (forerunner to March of Dimes) and the Sister Kenny method.

In about 1986 I began to experience muscle fatigue and weakness but was ambulatory. I was then diagnosed with PPS. In 1988 I was diagnosed with R/A. Joined Post Polio International and read all the literature I could find to learn how to manage my condition. I was able to keep up until 2020 when my husband died from cancer during covid. Without his help, I am progressively using my physical resources to the best of my ability but not without a lot of pain including a knee which no physician thinks can be safely replaced. I have exhausted all therapies for the knee per surgeon visit in February. Out of options. So I never walk without a walker and use a power chair to get around the CCRC where I live. I have paid home care aides through the week through my LT care policy. I find fatigue, constipation, and pain to be constant companions.

I live near Hershey Medical Center and the one doctor there familiar with PPS moved to Ohio the month I was to have my first appointment. I have been through most departments of neurology, physical medicine, P/T, and orthopedics but finally concluded I am pretty much on my own for management.

With PPS, you have to learn to pace yourself and get some exercise to remain ambulatory whatever way you can and to work with a gastroenterologist to help with the constipation. Dietary responsibility does not do the job. I have a jug of the liquid that you take for a colonoscopy I can use but Phillips MOM is very efficient in getting the job done too. I get extremely nauseated if I can't eliminate and it can sideline me for days. So I have a lot of sympathy for others in this situation.

On another note I am chagrined at the current environment of people who doubt vaccine efficacy. I worry that the herd immunity we worked hard to achieve is going to fall to levels that don't continue to sustain immunity.

There are good polio support organizations with a wealth of information such as this link https://polionetwork.org/ or https://post-polio.org/ If anyone is not familiar with either, please take the opportunity to check out the information.

Best wishes to all, M/E

I have had so many neurological ailments, since I was born, that each day of my life, it seems like I’ve been challenged, some way or the other, neurologically! I’ve had a whole gamut of neurologists and neurosurgeons to deal with, over a long life span, of nearly 80 years. it takes discipline, fortitude, determination, patience, and empathy, along with the ability to deal with a lot of pain, at times, in order to cope! I caught non-paralytic polio, before the SALK vaccine/sugar cube remedies were introduced. I had trouble walking, and got extreme stiffness and pain, in my leg muscles, as a little boy, around 9 years old, or so, We lived in a small town in Nebraska, and the local family doctor, a friend of the family, noticed my symptoms. i stumbled and fell down at times, seemingly clumsy! I’ll never forget when they put metal braces on my legs, for a while, and then the stretching exercises they put me through, where, especially the muscles in the back of my legs, became so sore-it was like a burning pain. I remember taking the sugar cube vaccines, around a year, or two later. Perhaps that prevented me from getting more severe polio. Other children used to make fun of me, when I would walk, because it was not a normal gait! My balance has always been somewhat compromised, from birth, because of a birth defect, where an artery in my brain was pressing in causing cranial nerve root compression, affecting balance etc. so I had a mild Ataxic gait. Over the years, I’ve had several bad falls, with concussions! I have had a couple grand mal seizures, and was put on Depakote for that! 7 years ago, I was diagnosed with Parkinson’s Disease, after suffering for nearly 8 years, of mild symptoms, like numbness, peripheral neuropathy, smelling and tasting problems, freezing episodes, slow walking, and a rolling pill tremor of my left hand, at times. Upon examination by a neurologist, I was found to have cogwheel rigidity signs, slow, ataxic walking, and the tremor, resulting in the Parkinson’s Disease diagnosis! My Neurologist is a Parkinson’s movement disorder specialist, and has helped me a lot! Where the post polio syndrome fits in with all my various symptoms, I am not sure about, because I have so many neurological signs and symptoms! I have brought the subject up with my neurologist, and he is mostly interested in helping me to just keep ambulating and be able to cope with advancing Parkinson’s Disease symptoms! I sure can relate to muscle fatigue, weakness, and ambulation problems! Good luck to you!! Patience is a virtue!

They treated me fo Parkinson's for nearly 10 years.
A good neurologist found it on an E.M.G.

Hello my polio survivor family,
My name is AL and I just found and joined the group today 5/10/25.
In 13 days I will be 83 years young. At the age of 6 I was hit by the Polio virus.
It killed my Achilles Tendon in my left leg. Was told I would never walk again and the best for me was to be put in a setting with other polio patients like me so I would not be different. SPENT 5 weeks in Queens General Hospital POLIO WARD. We were given shots 3 times a day of the native poison Curare (works by blocking the neuromuscular junction, preventing muscles from receiving signals to contract, leading to paralysis); We were guinea pigs Well, I stayed at home, learned how to walk again with the help of a visiting nurse working with me 2 times a week. Never a brace, learned to walk and my activities as I got older were fine. I loved playing handball during the day for 8 hours, went home and then out again for stick ball played in the empty parking lot of a grocery store.
Now 77 years later, 5 months ago my upper thighs, both calf s and lower back started tightening up with cramp like pain.

Being someone who believes you should also be your own doctor and I love to research; I immediately went to work.

With the help of the internet I visited many sites and used Ai to address my new challenge.
I have posted below my finding:
1) My first task to indicate that indeed it was Post Polio Syndrome.
After much research I ruled out other medical conditions based on my issues.
This was my finding: Post-Polio Syndrome (PPS) can cause a wide range of musculoskeletal symptoms due to the late deterioration of motor units and the long-term effects of compensation for muscle weakness. Here’s a breakdown of what might help manage the pain and associated symptoms you’re describing:
🔍 Understanding the Pain Sources
1. Mid-back pain-Likely from postural strain and compensation due to gait abnormalities or weakened core muscles. May also stem from overuse of paraspinal muscles supporting weakened lower limbs.
2. Strain on calves and back
3. Possible causes: Overuse from compensating for weakness elsewhere. Mechanical strain or localized injury
Pain Management - I ALREADY TAKE Acetaminophen & IbuprofenNot wanting to add more pills to my already many I take for CHF I have decided to go the TOPICAL ROUTE. -Lidocaine patches or creams AND Capsaicin cream
I JUST STARTED USING A *4% LIDOCAINE ROLL-ON and looking for a patch.
*YOU MUST PAY ATTENTION TO THE PERCENTAGE (&) OF THE ACTIVE INGREDIENTS

I AM NOW IN A HUNT FOR THE RIGHT CAPSAICIN PATCH

Clinical studies have shown that 0.25% capsaicin cream provides faster and more significant pain relief compared to lower concentrations. For instance, in a study on osteoarthritis pain, patients using 0.025% capsaicin cream experienced a 48% reduction in pain severity after just two days, whereas those using a 0.1% cream achieved similar relief only after 14 days

AND NOW AFTER THIS JOURNEY, I ASK IF THERE IS A STUDY OR A STUDY BEING CONSIDERED TO LOOK AT THE BENEFITS AND OR SIDE EFFECTS RELATED TO TOPICAL ALTERNATIVES.
IF ANYONE KNOWS PLEASE LET ALL OF KNOW.
IF THERE IS NOT A STUDY I BELIEVE THERE SHOULD BE.

BE WELL, BE SAFE, PEACE
ALLEN (BIGAL1)

This is BIGAL1, There is an error in my PPS story of 5/10/25.
See SENTENCE: For instance, in a study on osteoarthritis pain, patients using 0.025% capsaicin cream. That % of capsaicin cream is 0.25% NOT 0.025%.
SORRY AND BE WELL,
AL