Ignorance of GPs about even the existence of PPS

Most doctors in this world are totally ignorant about PPS plus they do not want to learn about it. They have a half page information in their medical text book. I teach my doctor about PPS and then I pay him him to learn from me so that he can treat me. I am 60 years old man and I had a bad polio attack when I year old. . Caused me hunch back and left leg is very skinny and short and also affected my left side o lungs. I was active most part of my life. I got the good education,job,marrige and children. Two years ago all of a sudden I had a Shorness of breath, very limited mobility, severe fatigue,sleeping problem, cardiomypathy and anxiety, I am not in pain except fatigue and bad muscles wekness. So I am totally homebound and uses oxygen and BiPap 24x7 . It is so sad that doctor can not do anything about it and can only relieve some symptoms by prescribing ati anxiety and sleeping pills. Let us hope for the best. There are some polio specialist in the US but they do not have much treatment atleast they understand our problem.

I don't know whether to laugh or cry quite honestly having found this site, because I was really beginning to wonder if I needed my head testing. I had polio as a child and in many ways it has affected my whole life. PPS kicked in on me with a vengeance about 5 years ago now. Like so many, I faced brick walls. Just getting someone to listen and take you seriously is like conquering Everest. All I can say is that help is out there but be prepared for fights and arguments along the way. They've told me I'm on a downward slope now, not much they can do. My kitchen is like Boots the chemists now with pills a go go. Some help some are useless. If you have a stubborn doctor, print off this page and stick it under their nose. Insist they read this!

Join the Club. I was in an isolation hospital, as a small child, in the early 50s with a fever and muscle pains, but was not diagnosed with polio. Subsequent muscle weakness was ignored and I was forced to play sports in spite of aciute pain. I now hate sport and suffer from some sort of auto immune neuromuscular condition, recently identified as probable post-polio. My symptoms closely mimic the ones described. My GP is understanding, but at a loss as to what to do, other than wear calipers, which help hugely, at the expense of restricted mobility. If someone had thouht of polio and applied supports at the time, I might have been saved a lot of trouble!

I have so many similarities to you, i too contacted Parylitic Polio at 18 month and got well wearing a calliper until 8 years, Throughout school was quite muscular and fit did all the slower sports that did not entail running around because I was often breathless. Had normal teen years until 19 when I was dianosed with chronic Asthma.  Weight problems started after my 1st child along with the use of heavy use of steroids for winter chest infections. ( Many times during each winter.)

managed to lead normalish life during middle years although lots of back  and joint pain. Was really pushing it in late 40s with weight lifting and swimming miles.

like you developed IBS, morbid obesity, really bad Sleep apnoea at night. muscle pain and spasms, numbness in left leg and lots of cramp. Some deep muscle/bone pain.  Excruiating crunching foot pain.  And of late unexplained breathing deprieciation.   where nothing except a bit of O2 will help.

My Drs dont even recognise that PPS exists and have no interest in persueing my complaints.  So we have hit a dead end.

The biggest issue is that there are so few survivors of Polio. Doctors don't expect to deal with patients who have our diagnosis..

I have, like you, experienced total ignorance of the condition and also total fascination from doctors who want to study me.

I have the same symptoms as you, but in different degrees..... We are all different, which is a further obstacle to receiving understanding.

There is confusion about exercise too. Some medics advocate rest to preserve muscle function, whilst others advocate exercise in the hope of developing function. There is no definitive answer, although research suggests that those of us who had a more busy/demanding lifestyle actually suffer more in later years.

I was a high school teacher for over 20yrs, and now, I can barely walk!!

The lack of understanding and knowledge of pps makes me feel alone and that others might consider me lazy or defeatist. I know that I am not and I rarely complain. I actually avoid visiting my GP as I know that he cant help me, and it therefore seems pointless to go there. I am terrified of ending up in a nursing home because of my lack of mobility so I tend to just 'put up and shut up!'

I should have given my own history like others have. Here goes....

I am British and contracted poliomyelitis at the age of 18months. I am now 58. My condition was ignored by my GP for over a week. Action was only taken when I was unable to move. At which point, I was placed in isolation for 6months. I had corrective surgery at least once per year until I was 18. That meant that I was able to ditch the caliper aged 8, have a good education and train to be a teacher. I had 2 children and functioned well until I was in my forties.

I then began the downward spiral of illness and plateau until I am where I am now. My right,leg has always been thin, weak and short, but now it is just a heavy, atrophied lump that is too weak to support me. . I also have the added joys of pain, deformity, osteoporosis, depression, obesity, deep fatigue and sleep problems.

During the 1950's I was given the experimental polio vaccine; thius provided a very very mild polio. I thought nothing of this until recently at age 68, when I started having problems swallowing and begab to fall down for no reason. MT GP has not been of any help and unable to explain my problems. I have been able to mask the swallowing by careful eating and drinking; forcing my mind to stop the breathing reflex just before I swallow, The problem is slowly returning even with this mask; hopefully it does not get worse. My GP contributed my falls to a genetic problem. My legs get very tired after 4 hours of climbing ladders and stairs; refusing to support me and down I go.  I have found nothing helps but rest in this case. Give me a day of couch setting and sleep; i am good for another 4 hours.  Today was abad day for me, I carried a box of pool chemicals down stairs, got to the bottom without incident, standing on the floor and my legs gave out. I now have both arms bruised from the fall. I am currently sitting on the couch covered with a blanket because I am cold in a 75 degree (F) room. One day at a time is all we can do, while waiting for our health system to catch up to us.