Last post Sat, Jun 21 2008 9:48 PM by rainey826. 9 replies.
HI, I have post-polio syndrome and I would like to chat with other people who have it also.
Hi, I have post-polio sybdrome, too and I will be glad to speak with you. My English isn't so good, so, hope you will have parience with me , Thanks. Be blessed!
Hi there guys and girls, I am another one with post polio syndrome, I am a bit scared because I still dont understand why its coming back, but if anyone wants to tell me more about it please do....Ciao for now Lilla xoxox
Dear Linda,
Both my parents and closest childhood friend had polio in 1951, all had to be in iron lungs. I believe that I had polio too, although not clinically diagnosed, not as sick as parents or friend. I think this because my left leg has never been "right" my whole life - poor rotation, hip problems, cannot sit cross-legged, always a clumsy dancer and clumsy at sports. I am now 61 and over a year and a half ago my left foot started to feel weird. I have ended up with a dropped foot, weak left leg/hip, so I wear a brace. Right leg is starting to weaken. I use forearm crutches and just bought a 3-wheeled scooter. I can't walk very far without getting really tired. I have fallen a lot too. The worst part are the muscle twitches - non-stop all over, and muscle cramps/stiffness. Neurologists say they think I have ALS, and that I couldn't have PPS because my reflexes are strong. They tell me I have a fatal disease, that there is no treatment, and send me home with no hope. Maybe I am not a textbook case? Doctors have been absolutely no help at all. I had electrodermal screening and the results showed polio, not ALS. I tend to believe the screening more than the neurologists. I have only had two tests (MRI and EMG) out of the 8 diagnostic tests needed to confirm ALS, yet the doctors won't do more tests. I have recently applied to change my health provider.
I really want to talk to other people who have PPS and share symptoms. I have done a lot of reading, but it just isn't the same as talking to a person who is experiencing the same things that I am. It is very scary. I have had to retire early because it is too hard to get around - I have been a high school science teacher for a long time, and I loved every minute of it. I have made changes in my life - I try to get the the pool a couple times a week, changed my diet to all organic, had my dental mercury amalgams removed, take lots of vitamins/supplements/amino acids/antioxidants, and I am presently taking no medications. I still don't know what disease I have, except that it is a motor neuron disease. I know that sometimes we don't get the answers that we would like to have in our lives, and we have to make the best out of scary situations.
Do you have muscle twitches? Do other PPS folks have them? Is there any help for twitches? Does PPS continue to progress for a long time.....does it ever stabilize, or can you become disabled in all limbs?
Thanks for reading this. I would be so grateful for a response.
Carolyn
Hi, my name is Jeff. I too are a polio I contacted it in 1957. I think we are the LUCKY ONES to live. I"ve heard that aswell, that polio is coming back, if it does, I"m sorry to say that they will never get me back in that Iron Lung. They call it PPS, but some times they call it LEOP ( Thats Late Effects Of Polio, I wish that they make up their minds. Stay Positive. Jeff.
hello i am rainey and feeling the side of PPS ! times i feel so alone and scared ! i worked so hard to get where i was and now i am in a chair !i feel defeated ! will love to chat with anyone at anytime ~~~~~~~~~~~~~ rainey
i would love to chat with you anytime yes i have polio and just starting with pps ! no fun rainey xo
