Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Hi, I was diagnosed with Polio when 11 and in my forties I was told that I had Post Polio Syndrome. I did not have polio but have Tethered Cord / Lipoma. Doctors did not know much about TCS when I was first diagnosed and Polio was rampant then. It became easier for doctors not to look any further when my legs became worse over time and tagged it as Post Polio. It took one doctor to realize that all the symptoms I had (ONE) pointed to me not having Polio at all. Loss of sensitivity of the limbs is not a symptom of Polio and I had / have extensive loss of sensitivity. In ways I am glad I was diagnosed as I was. It was before Mri's and the knowledge was not there. I was told by my Neuro that I would possibly ended in a wheelchair much sooner. Cherie A member of www.spinalcordinjuries.com.au > > I did/do not have Polio or Post-Polio. However, I did want to say that when > I was having problems before my last Detethering, one of my Dr.'s said what > I was experiencing was what looks like Post-Polio. So, what that makes me > think is that if I had an unexperienced Dr. they would have just gone with > that, and not looked further, even though I did not have Polio. The Symptoms > are that similar. > > So, it sounds like to me the Diagnosis could very well be right. But it > never hurts to get a second Opinion. > > Me > Nebraska, USA > mymocha@... > > > > > There have what I consider, quite a few people over the years who have > > said > > they were diagnosed in the beginning with polio/post polio. My husband's > > aunt also has this diagnosis, but walks like many do with spina bifida or > > lipomeningocele (you know....the hip kind of pushes out to one side much > > further than it should when a leg is pushed forward to walk.) She uses > > Canadian crutches and also has some other problems that are similar to > > those > > with Lipo. > > > > I've always wondered. If you are/were diagnosed with polio/post-polio, > > how > > was the diagnosis made or rather, what did they use to base their > > diagnosis > > on? Is there a blood test or is more or less they rule many things out > > and > > what you're left with is a Polio diagnosis? I've often wondered if I > > should > > bring up neural tube defects to her, because with the polio/post > > diagnosis, > > no one does anything for her and I can't help but wonder if there is > > something else wrong, if they could help her somehow. > > > > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email kathy@...,michelle@..., rick@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 > > Hi, > I was diagnosed with Polio when 11 and in my forties I was told that I had > Post Polio Syndrome. I did not have polio but have Tethered Cord / Lipoma. > Doctors did not know much about TCS when I was first diagnosed and Polio was > rampant then. It became easier for doctors not to look any further when my > legs became worse over time and tagged it as Post Polio. It took one doctor > to realize that all the symptoms I had (ONE) pointed to me not having Polio > at all. > Loss of sensitivity of the limbs is not a symptom of Polio and I had / have > extensive loss of sensitivity. > In ways I am glad I was diagnosed as I was. It was before Mri's and the > knowledge was not there. I was told by my Neuro that I would possibly ended > in a wheelchair much sooner. > > Cherie > A member of > www.spinalcordinjuries.com.au Hi Cherie, As I have suggested (jokingly .. but perhaps not any more) there are enough of us out there/here to form our own club.. the 'Formerly diagnosed polio/post polio patients who really have spinal cord problems " I'm glad you finally got the correct diagnosis. I am in the midst of recovering from surgery and unable to hang out on the Internet for too long yet, but I too was misdiagnosed. I hope to formulate a plan to get the word out so needless suffering can be avoided. {{hugs to all}} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 I'm more then sure it is possible to have both Conditions. In saying that though........when I was Symptomatic before my last Detethering, and they were trying to figure out what it was, they did mention to me, that if I didn't have a Dr.(s) that knew better, it would be very possible for me to have been Diagnosed with Post Polio Syndrome......as the Symptoms are very similar to Tethered Cord. But since I was never Diagnosed with Polio, and my Dr.'s knew so, that wasn't a possible Diagnosis. Me Nebraska, USA mymocha@... > I was diagnosed with Polio when 11 and in my forties I was told that I had > Post Polio Syndrome. I did not have polio but have Tethered Cord / Lipoma. > Doctors did not know much about TCS when I was first diagnosed and Polio > was > rampant then. It became easier for doctors not to look any further when my > legs became worse over time and tagged it as Post Polio. It took one > doctor > to realize that all the symptoms I had (ONE) pointed to me not having > Polio > at all. > Loss of sensitivity of the limbs is not a symptom of Polio and I had / > have > extensive loss of sensitivity. -- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/2005 Quote Link to comment Share on other sites More sharing options...
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