Patient stories: Post-polio syndrome
I’ve been planning to write this post for a while, so it is time to show you some links about a condition that affects about 25 percent to 50 percent of polio survivors. According to the National Institute of Neurological Disorders and Stroke, post-polio syndrome:
Post-polio syndrome (PPS) is a condition that affects polio survivors years after recovery from an initial acute attack of the poliomyelitis virus. PPS is mainly characterized by new weakening in muscles that were previously affected by the polio infection and in muscles that seemingly were unaffected. Symptoms include slowly progressive muscle weakness, unaccustomed fatigue (both generalized and muscular), and, at times, muscle atrophy. Pain from joint degeneration and increasing skeletal deformities such as scoliosis are common. Some patients experience only minor symptoms. While less common, others may develop visible muscle atrophy, or wasting.
I like those services where patients can share their stories about medical conditions. Examples are MDjunction.com or iMedix. Another way to share these stories is Google Docs. Here are two stories (first and second) from patients who underwent a new therapy of post-polio syndrome. Both stories were made public through Google Docs.
Further reading:
Yet more reasons for people to get their kids vaccinated!
Nice post
My Mother had polio and even though I was not diagnosed with the disease I suffer from Post Polio Syndrome on a small scale. Is this something anyone has heard of? Can I have defective genes from my mother’s Polio that passed on to me. I was born with pits on my right leg and foot that doctors say was a birth mark. On that same leg I developed skin cancer, basil cell carcinoma. I also have been having a lot of pain wether I walk, sit or lay down on my right thigh. It’s like a nerve pain.
I have suffered from Post-Polio Syndrome since being diagnosed in 1995 and going thru many doctors before it was recognized as PPS. I have never heard of PPS being transfered to a child and have asked others about their children. Many people suffered from the polio virus in the early 1940′s and 1950′s and the few who did not even know they had polio, those who thought it was a cold didn’t suffer like myself and others who ended up in iron lungs or in my case paralized for more than a year. Others died in days from polio. I wish I could help, but if you go the web site and locate Dr. Siegel, At Rush St. Luke’s Medical Center in Chicago, Ill. He is one of th best know doctors for Post-Polio Syndrome in the country and he can help you, or get you in touch with someone who does…..good luck, you can contact me at:
Dear Mike,
Hello, my name is Tasia Marie Saye, and I live in Missouri. I am 13 years old, and I am doing a website project on polio for National History Day. I am required to have an interview for this project and I was wondering if you would be able to answer some questions for me. If you have the time to do so, that would be wonderful. Please answer the following questions to your best ability.
1) How long did you have polio?
2) What were some of the symptoms you had?
3) Had you been vaccinated with the vaccine?
4) Did you have long lasting side affects? If so how long did they last.
5) Does it affect your daily life?
6) What age were you when you got this disease.
Thank you for your time, and if you are able to help, then I will be very happy.
Sincerely,
Tasia Saye
hi Tasia, i know i’m not Mike,but thought i’d provide a little input to your questions here..I too live in Missouri, KC..I will be 55 in March,and i was at the tailend of the polio epidemic when i got polio. I had even had two of the vaccines,my mom took me to get the third one,but was sick at the time,and they wouldnt give it to me being sick. I was born in 1957 and was about a year old when i got polio. My mom noticed i would keep falling down a lot, was her concern,and we were in the military at the time,and she took me to several doctors to try to find out what was wrong with me,and they couldnt figure it out,finally my mom took me to a civilian doctor and right off he knew what it was,so i was actually 3 yrs. old when i was diagnosed with polio. It affected my left leg,and i also had the drop foot too. I was in braces back then too. I had to wait till i was about 9-10 yrs. old to get operations on the drop foot,which they did tendon transfers,and then had a triple arthrodesis done,to stabilize the foot. Because of weakness in that polio leg,i always had restrictions growing up,to what i could do and couldnt do,leg would tire out easily. I cannot bend that foot,foot is about an inch smaller than my good foot,my leg is skinnier and shorter than my good leg. But within the past ten years, i develop bone spurs every few years on that foot,as i walk on concrete at my job,and beings that foot isnt resilient. I have started having problems with my good side going bad now. In 2010 i had rotator cuff surgery on my right shoulder. My job is very labor intensive with a lot of heavy lifting,i am a meatcutter/meat wrapper. In reading more about polio,i actually learned that the “cold” is the worst thing for a polio person,and i work in a “cold” environment. In August of 2011,i had a hip replacement done,on my good side,and i am having a very hard time as to the recovery. My surgeon did the anterior hip,which is great,and would recommend this type to anybody needing hip replacement. But my polio leg has been greatly over used when it comes to the therapy on my hip replacement recovery,as i have to stand on the polio leg for a duration,and too many standups tire out that leg. I have been back to work for 3 months now and i still have a lot of weakness in that leg,as to the inner thigh muscles,and when i walk,i feel the weakness,and my leg tends to fly outward. I have taken two falls,and many stumbles,and i cannot stop myself from falling,and really concerns me a lot. I am having an EMG done in a week,to find out if my nerves are causing this. What really concerns me a lot,is i have to have the other hip replaced,all due to arthritis,and need to get this done as soon as possible,as the pain is unbearable,but i need to have more strength in my good leg before i get this done,and will i have enough muscle strength to endure the therapy rehab. on that polio leg. One thing for sure is,there will be things that i will not be able to do in therapy,for that leg,as i have had to do in therapy for this one. And yes,polio does affect my daily life,more now i think,as i have gotten older. Stairs are difficult for me,even bathing is becoming harder,arms get weak sometimes,as i use them to lift myself up from sitting(a lifelong thing),have no energy after working 8 hours. Also when i had this hip replacement done,it made that leg longer,which my left was already the shorter one,so it has been very awkward for me to walk,and then in turn,it puts a lot more stress on that other hip,which causes me a lot of pain. So my only choice is to get the hip replacement done,or live in excrutiating pain. I have this very strong sense of “unsteadiness” when i walk,and doing this anterior approach with the hip,they dont mess with the muscles,so my doctor says its got to be a nerve thing,not getting a “connection” to the muscles,and this is the reason for the EMG to see whats going on. Well i hope i gave you some information,and if you have further questions,please dont hesitate to ask..i found yours to be a recent post so is why i tried to give you some of my experience. Cheryl
i have been since 20 …fever … i was 4yrs … vaccinated… post polio residual paralysis ..
I had polio in 1951 at the age of four and my right arm has been paralyzed ever since. I had a broken arm, still in a cast when I contacted the disease and the doctors told my parents that is why the paralysis settled there. I have had no symptoms of PPS thus far but am having some odd changes that I wonder if any PPS patients have experienced. I cannot tolerate many medications: specifically any cholesterol meds, any meds for prevention of osteoporosis and now most recently, I cannot tolerate meds for acid reflux. The symptoms in each case are the same: severe muscle pain and some mild weakness. When I discontinue the meds, the symptoms disappear. In addition, I have developed dysphonia which is a vocal problem that makes my voice sound strained. I am a healthy 62 year old women who exercises several times a week and enjoys hiking. I would love to hear if anyone else has experienced anything like what I have described and if so, if their doctors have attributed it to PPS.
Thanks
I can relate to intolerance to osteoporosis medications since I had the same reaction to Fosamax on 2 separate tries, but then had no problem with Actonal, which I am currently taking. I never made a connection to that reaction to my PPS. Like Martha, I had polio in 1952 and am currently 61 years old. I have paralysis in my left leg, spine (I had a spinal fusion at age 12) and slight deteriation in my left hand. I think anything that compromises your immune system may make you more likely to had been infected in the beginning. I’ve had PPS ever since I gave birth to my 2nd child, 26 years ago. Since I had a C-Section, that would support the idea that PPS can be brought on by surgery. Which brings me to my current problem.
Are there any PPS people out there who have also had Open Heart Surgery? I’ve been diagnosed with Aortic Stenosis, which means I will have to have my aortic valve replaced and that means OHS. Since I don’t have the power to stand from a sitting position, I use my upper body strength to do everything and also use crutches to walk. As I’ve gotten older, I depend on a motorized scooter to go long distances. I’m very concerned about the recovery from the surgery, especially getting mobile ASAP after the surgery. I understand that this is essential in order to avoid blood clots. Most folks walk around for several weeks clutching a small pillow to their chest area after the surgery. I can’t even carry an umbrella and the crutches will certainly make it difficult for my chest to properly heal.
Anyone out there who has had this experience and can advise me?
Thanks, Jane
I had my aortic valve replaced 5 yeas ago. Since then they are doing it with minimal invasion. I don’t know where you live but you might want to look into that. I also had a nasty post op infection and I am telling everyone that know to have preop nasal cultures.
Good luck.
Moal
Phyllis DiCicco: I read your post while searching for a link that would help identify why I have become ill at age 43 with a rare illness called Sweet’s Syndrome and with CFS. The other day a pain ran through my spine that felt as though I were paralyzed and the recolection that my father was a polio survivor (since deceased) Sweet’s Syndrome is very rare however I cant help but wonder if there may be a connection. I was also very ill as a child the doctors never labled what was wrong with me (TB was suspect but ruled out)
Have you found any further research on what types of illness children of polio survivors have been diagnosed with?
Kim
No, Kim I have not found out what types of illness children of polio survivors have been diagnosed with.
I have since been diagnosed with a degenerative hip and in need of a hip replacement. The two doctors I went to have not confirmed that it has anything to do with my mothers polio but that it may be gene related or I was born with some other desease of the hip. I don’t want a replacement if I can stand the pain so I am waiting it out.
Have you found out anything?
Hi, I know you wrote this message a couple years ago but I am searching for illnesses common in children of polio survivors. I am 28 years old and suffer from CFS and severe stomach problems, my mom has post polio and is in a wheelchair, and I am trying to figure out if there is a link, because I’m sure there must be. thanks for any help anyone can give me.
My father had polio and I have often wondered why I also feel fatigued and can relate to so many of his symptoms. I just googled “children of polio survivors” and was amazed at how many others have problems just like me.
Hello! My father has polio and postpolio, and i have the same symptoms as postpolio. I also wonder if it is something i have received from him. Im glad to here that there is someone in my situation. I live in Norway, and there is no documentaton on this.
Hello! can you tell me the symptoms of sweet,s syndrom
I wonder if Myalgic encefalitt is the same as postpolio. It is the same symptoms. In Norway they dont no very much of this illness an a lot of people has taken LP course in England. They say they have been coured of a course in three days. I think we can learn to live a better life after this course, but i dont think it can coure this illness. Has anyone heard of this coure. In norway there is like a religion propaganda with this coure. And i feel that it brakes my self confidense to hear this, because it makes me feel like a looser, that my illness can not be coured by this Lightening prosess.If anyone knows anything about longtime study of these people, i will be glad to hear.
to Jane Berman
I was reading this site as my husband seems to be suffering from pps.
Meanwhile, I wonder if you wold be interested in looking into Robotic (ohs) procedures for your heart condition? My neighbor had by-pass in this manner and I am not sure if the valve condition could be simarlarly repaired. With the robotic surgery, you would heal faster and the need to open up the chest might be avoided. It was done at Cookevill Regional Medical in Cookeville, Tennessee. Good luck
Thank you for the advice and good luck to you and your husband
Can a Dx of PPS be made if the person had “non paralyic polio”?
I just want to know if PPS can be passed on to the children of the survivors.
Me too!
When I was 15 months old I contracted polio which affected my left hip and leg. I am scheduled for a right hip replacement this April and am concerned about my recovery because of the new weakness on the left side. Has anyone gone thru a hip replacement on their “good” leg? What am I in for?
Dear Arleen,
Hello, my name is Tasia Marie Saye, and I live in Missouri. I am 13 years old, and I am doing a website project on polio for National History Day. I am required to have an interview for this project and I was wondering if you would be able to answer some questions for me. If you have the time to do so that would be wonderful. Please answer the following to your best ability.
1) How long did you have polio?
2) What were some of the symptoms you had?
3) Had you been vaccinated with the vaccine?
4) Did you have long lasting side affects? If so how long did they last.
5) Does it affect your daily life?
6) What age were you when you got this disease.
Thank you for your time, and if you are able to help, then I will be very happy.
Sincerely,
Tasia Saye
Hi Arleen, I just had my right hip replaced on Oct. 21st.2010. It was a minimal invasive surgery. The first week and second week you need to stay out of work and recoupe. You feel good right after surgery since it’s considered a well persons surgery but you have to listen to the doctor for the recovery to go well. Do everything they tell you to do and you will do fine. I do house cleaning and I am wait staff for a caterer. By the third week I was back cleaning houses and by the end of the third week I did my first catering job. I had a strong left leg and left hip, my bad side was the right so I don’t know if it will be the same for you. If you are anywhere near Philadelphia go to Dr. Eric Smith at the Rothman Institute, he is the best. Good Luck
Thank you for your input, Phyllis. You have eased my mind. I will look into Dr. Smith in Philadelphia since I am not that far away.
Hi Arleen,
Did you ever have your hip done. How did it go and where did you have it done?
Hope you are feeling great.
forgot to leave my name. Phyllis
My mother contracted polio when she was 8 and spent over a year in an iron lung. Later she was told she would never cary a child to term. Well, here I am all the same. At 46 years old I have been diagnosed with arthritis in my spine, degenerative disk disease causing severe bulging in the L5/S1 area and pressure on the nerves there. Most days it’s excruciating. I have also been diagnosed recently with Fibromyalgia. Can anyone point me to any info that might shed some light on whether or not my issues have anything to do with my mother’s illness as a child?
when iam 8 months old suffered from polio in one leg and one hand, Doctors reduced the growth of one leg and have bone stimulation for another leg 10 operations for both leg and hand in total Reduced my height considerably But after i became pregnant and after my c-section 11 th operation, this muscle weakness and twiching became aggravated After c-section i got breaking bone sounds Can U please suggest any remedy to reduce pain in joints and reduce muscle weakness i will be very thank ful i am anable to do physiotherapy also
I amlI am 37 years old and I am also a child of a polio survivor. My mom had a severe case when she was young affecting mainly her legs. She now has pps, is in a wheelchair and battles pain every day. Since a child I have contracted the epstein barr virus which hospitalized me for over a month when I was 7 years old. Since then I have been hospitalized due to a low immune system and seem to contract everything I come into contact with. I have been diagnosed with FM CFS and live in pain. They are now going to rule out MS….This must be related to the polio, right? I have a cousin that suffers similar to me and her mom had polio as well. Any ank you.or input would help…th
I have the same problems and concerns.
Dear
Hello, my name is Tasia Marie Saye, and I live in Missouri. I am 13 years old, and I am doing a website project on polio for National History Day. I am required to have an interview for this project and I was wondering if you would be able to answer some questions for me. If you have the time to do so that would be wonderful. Please answer the following to your best ability.
1) How long did you have polio?
2) What were some of the symptoms you had?
3) Had you been vaccinated with the vaccine?
4) Did you have long lasting side affects? If so how long did they last.
5) Does it affect your daily life?
6) What age were you when you got this disease.
Thank you for your time, and if you are able to help, then I will be very happy.
Sincerely,
Tasia Saye
Hello, I also have a similar story and have been trying to get diagnosed correctly. Did anyone do a viral panel on you to see what your antibodies (poliomyelitis) are? Thank you, and I hope we can e-mail one another with more information.
Thank you,
Carol
Chicago
Blessings to you all – fellow polio survivors! I contracted polio as an infant which affected my right leg making it smaller and shorter. I was a spirited and competitive child so I pushed myself to run and swim as fast as the other boys. At age 13 Doctors performed surgery to slow the growth in my stronger left leg which evened me out pretty well and now I simply use a small lift in my right show to help. As a teen, I was able to do just about anything I wanted and continued to push myself. I avoided wearing shorts out of vanity because it revealed my smaller leg. PPS hit me when I was in my late 20s and I began to experience pain and twitching in my right leg – it’s been with me for years now and never lets us. I just try to stay busy to keep my mind off of it – but recently i began experiencing a lot of hip pain on my right side. I’m 56 – and pretty active, and would like to stay that way. I’ve heard hip replacement doesn’t always work out for polio survivors but what have you guys heard? Also – does anyone know how to make the continuous twitching stop??? It’s like a lightning storm in my leg that never ends.
Dear Scott,
Hello, my name is Tasia Marie Saye, and I live in Missouri. I am 13 years old, and I am doing a website project on polio for National History Day. I am required to have an interview for this project and I was wondering if you would be able to answer some questions for me. If you have the time to do so that would be wonderful. Please answer the following to your best ability.
1) How long did you have polio?
2) What were some of the symptoms you had?
3) Had you been vaccinated with the vaccine?
4) Did you have long lasting side affects? If so how long did they last.
5) Does it affect your daily life?
6) What age were you when you got this disease.
Thank you for your time, and if you are able to help, then I will be very happy.
Sincerely,
Tasia Saye
Dear Sir. Madam,
I discussed about this kind of muscle weakness and spams with my family doctor who has done c-section and mailed to very good doctor for this PPS. They say that it is not completely curable but can subside the problem with moderate exercise, hot water therapy, meditation.
Try getting through with 80-90% bodily paralysis and still be on your feet aged 68.5 years!
G
Seems you are more centred on yourself than others. Do you think you’re to get credit because you have not been hit with as many medical problems as many?
To Scott’s August 29th entry:
Your story sounds like a mirror image of mine. I did have a hip replacement this past March which dislocated 12 days later. The E.R. doctor broke my femur trying to manually reduce it which caused me to go through another, larger and different replacement surgery. The recovery was rough since I couldn’t get around using my polio-effected leg for anything but a prop. It has been about 6 months now and it still doesn’t feel quite right. I also suffered the muscle spasms that come along with PPS which made it even more unpleasant. I can no longer sit on the floor with grandkids for fear of injury or not getting up by myself. This does not mean you should live with the pain of an arthritic hip. I would still recommend a replacement, just be prepared for whatever may happen. No two are the same and my situation may be better or worse than others. We are a tough bunch and we can get through anything this stupid PPS hands us. Good luck!
Arleen-1951
My daughter is 27 and is a polio survivor. She is anticipating hip replacement as I write this. I am so glad I have all this informationa available to me. Thank you all and thank goodness for the internet. She also was in a serious car accident last April and broke her femur in 2 places on the left leg wich is the one affected by the polio. Paralyzed in that leg with hip dysplasia and scoliosis. So unsure what to do and she just wants all the pain to go away. Any suggestions would be so helpful. Thank you all again for sharing.
I had polio in 1947, Paralitic polio that affected my right side. The virus lasted 2 weeks and then I was left with a right leg that did nothing. My mother was giving me a bath and somehow did not check the water temp, it was warmer than normal, she put me in and I stood up. The shock was close enough to the time of the virus that it allowed my leg to move. I have had several surgery’s and my dr. said, that I should run as fast as I could, go as far as I could and do all the things I wanted, because eventually I would not be able to. That was in 1959. I did every thing I wanted, hiked, campled ran, had four children and continued to do all that I wanted. at the age of 45, I started to slow down. Not just a little I mean stop. I still do some things I am now 65, have been diagnosed with aortic stenosis. I can’t walk far, I do not do stairs and the movement of useing a mop or a broom leaves me in extreme pain. I do not react to pain meds, and the only relief it to take a warm bath, or go to bed. It is frustrating. But I was able to walk, drive a car and do many things that most can’t. I have to take it day by day.
I HAD POLIO WHEN I WAS 2-3 YEARS OLD AND IT PARALYSIS MY TENDONS IN THE FOUR FINGERS ON MY RIGHT HAND. MY THUMB WASNT AFFECTED. I had corrected surgery when I was 8. I had a tendon transplant. They took one tendon from my right thumb and tied it in to my wrist and allowed me to use my fingers. I have half the use of my fingers now. Ive often wondered if I shouldve chosen to transplant the tendon from my right big toe instead of my right thumb. Anyway through the years Ive tried to live normal. I didnt consider myself a crippled. Im 50 yrs old now and my body has been on a decline for over a decade. Im getting weaker and that worries me. Simple tbings tire me out now. Ive been so tired and dont understand why. My muscles and joints are very sore and it seems even my breathing is affected. Nights are horrible and have been for many years. I have severe pressure in my head everytime I lay down and it wont let up till 2-4 hrs. I feel like Im gradually dying. Can anyone help me. Thanks for reading my post.
Highly educative and informative. Inspite of polio attack in childhood, some ;learned ladies are performing well with their inherent merits and potentialities. I pray to saidurgamma to bless them all at all times.
success always enhances confidence, shradda and saburi
Chennupati Praveena Sri
Go ahead in life inspite of new muscle weakness due over use of polio affected parts, depending upon age. Tough times will never last long, but tough people will be around barring pious learned people with High Emotional Intelligence.
Cheers.
My Grandmother had Polio, and at 44 years old, my major weight bearing joints are literally, falling apart. I have severe osteoarthritis, and am bone on bone in both knees and shoulders. I also have many many drug allergies, and am always cautious when given a new medication. I am starting to wonder if my grandmother’s polio could be contributing to this. There is so little information about this question out there.My father also has arthritis, but only one knee is bone on bone. This little blog was the only thing that came up with any real depth to it on the subject. I see I am not alone with descendants of Polio survivors having things wrong with them..severe or strange things wrong with them. I am the only biological female grandchild.
Thanks for the info. We are in Jacksonville, Florida and are going through Shands which has a good reputation for ortho. She has osteoporosis in her hip and a rod in her leg with screwsa holding it together. They want to build her a whole new hip with femur attached to grow into her natural bone that is left. I understand you need good muscle to make this happen and she does not. Open to all suggestions, thanks