My polio story won't apply to most of you, but a few people might be helped a lot. It begins very typicalóbut ends very different: Polio as an infant, 2 childhood orthopedic surgeries on "polio foot", active and even a bit athletic in 20's and 30's, got lazy in 40's and out of shape (maybe noticed that polio leg was slightly weaker. Stairs were slightly harder work in late 40's but I ignored it, planning to "get back into shape soon". Age 50, finally decided to get into shape, trying to bike and jog a very short distance at first. It kept getting more difficult until, I realized I couldn't raise my right leg sideways at all! And I had always assumed my polio had affected only below my knee! I ran to the net and learned about post polio. I was careful to refrain from overuse. As was true with a lot of my "post polio friends" I realized that eventually if I kept getting weaker I might need to go onto Social Security Disability. I started doctoring to get a diagnosis of post polio onto my medical records, as I was advised to do. I was tested to rule out other problems, negative, of course--until the MRIólipomyelomeningocele!!!! A congenital neural tube defect related to Spina Bifida! Correctable with surgery! I ran to the net again and to my surprise discovered that it causes orthopedic deformity just like mine -- and just like polio. It took a few minutes to really sink in that I never had polio at all, or post polio. And according to my neurosurgeon, overuse is not an issue, what I need to avoid until I get the surgery is any jolting or bouncing moves, or stretching. I had been stretching a lot.
How could I have been so misdiagnosed? My mother was alone during a polio epidemic of the early 50's, My father away in the service and she had no transportation and was far from a hospital. I got very sick with a fever, she called the hospital and nurses told her to keep my legs in very hot water. The next day I broke out with the measles. A few years later at age five, the doctors, looking at my "polio foot" pronounced the diagnosis that it had indeed been polio.
This is not common, but there must be other people out there with this condition that so closely mimics polio and post polio. Try this link: www.lfsn.org/lipomyel.htm
or just put in lipomyelomeningocele and adult into a search engine or "tethered spinal cord". (There also can be some visible signs at the base of the spine, which I have, and many doctors have seen. They just took my word for it that it was "just a birthmark" and some bowel issues.)
Iíve since had the surgery to repair the defect and stop the degeneration. My neurosurgeon says that indeed there are probably hundreds of other people out there that have been misdiagnosed. I would like to reach everyone in the post polio world with this information. Anyone who canít remember an acute illness of polio should consider this a possibility. The great thing isóthis degeneration can be stopped with surgery!