Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 Hi Melody & all other CMTers; Lee here, re: snap, crackle & pop, this is my son. His ankles, knees & hips, are constantly making this music. He has had his hips x-rayed, twice now. They are perfect, thank; goodness. His doctor said; that due to his age, he will not need them x-rayed again. hmm On the other hand, he is going in for foot surgery, July 19the. Six months later, they will operate on the other foot. Oh boy; I have my fingers, crossed, hoping everything turns out well. He has turned 15 years old, this month. He is such a great help, around the house. I have much hip pain. I had a CT scan, this past February. Other then sclerosis of the spin in four places, my hips are fine. After wearing these new AFO's Helix for too weeks, now. My back pain has decreased, astoundingly. Plus, physio therapy & exercise, things are looking up. I was strongly advised to go swimming 3X's a week. I also; have difficult holding my head up. So, my physio therapist subjected a blow-up pillow. Also; I must contact my Occupational therapist, she can advise me of other aquatic equipment. Wearing the Helix - AFO's, has opened up a whole new world, for my physical activities. The Helix provides such support, they make you want to walk. They have increased my balance, with more practice I might not need my canes any longer. At the moment, my canes are no longer needed for supporting & pushing me along, in order to walk. With wearing the HELIX AFO's I only use my canes to balance me a little. Melody; you mention post-polio, is similar. I was wondering if this is heredity?? Or could people be misdiagnosed?? I wonder if people could still get this disease?? :] Keep smiling Lee .. -- _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 -----Original Message----- From: Lee Edison <eemarilee@...> < > Date: Tuesday, May 15, 2001 6:37 PM Subject: Re: [] Re: Joint problems Hi Melody & all other CMTers; Melody; you mention post-polio, is similar. I was wondering if this is heredity?? Or could people be misdiagnosed?? I wonder if people could still get this disease?? :] Keep smiling Lee .. >>>>>>Its not hereditary. People have been diagnosed as having polio/post polio who really have CMT. Its a common misdiagnosis. ~>Becky M. -- _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 Absolutely, especially in the baby boomer generation. Three different doctors told my parents I either had polio or post polio syndrome before my CMT was diagnosed at age 15. BC ----- Original Message ----- From: Maxwell <rmax@...> < > Sent: Tuesday, May 15, 2001 5:05 PM Subject: Re: [] Re: Joint problems > > -----Original Message----- > From: Lee Edison <eemarilee@...> > < > > Date: Tuesday, May 15, 2001 6:37 PM > Subject: Re: [] Re: Joint problems > > > Hi Melody & all other CMTers; > > Melody; you mention post-polio, is similar. I was wondering if this is > heredity?? Or could people be misdiagnosed?? I wonder if people could > still get this disease?? :] > > Keep smiling Lee .. > > >>>>>>Its not hereditary. People have been diagnosed as having polio/post polio who really have CMT. Its a common misdiagnosis. ~>Becky -- > _________________________________________________________________________ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 -----Original Message----- From: mel2mars@... <mel2mars@...> < > Date: Friday, May 18, 2001 2:35 PM Subject: [] Re: Joint problems >Melody; you mention post-polio, is similar. >> > >Hi Lee, > Not that the diseases are similar, >>>>>>If not similar, then why are so many mis-diagnosed as having polio or post polio syndrome, when they really have CMT. ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 I had an orthopedist tell me that because both CMT and polio can twist the arms and legs that at first glance in many cases an MD assumes polio. ----- Original Message ----- From: Maxwell <rmax@...> < > Sent: Friday, May 18, 2001 2:07 PM Subject: Re: [] Re: Joint problems > > -----Original Message----- > From: mel2mars@... <mel2mars@...> > < > > Date: Friday, May 18, 2001 2:35 PM > Subject: [] Re: Joint problems > > > >Melody; you mention post-polio, is similar. >> > > > >Hi Lee, > > Not that the diseases are similar, > > >>>>>>If not similar, then why are so many mis-diagnosed as having polio or > post polio syndrome, when they really have CMT. ~>Becky M. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Becky, Lamar here, Polio is caused by a virus but is almost no longer around. Post polio syndrome is a neuropathy that people that had polio develop, sometimes years later and sometimes only a short time after the actual infection. It has many of the same symptoms of CMT. There were many that had polio and had a very mild case that was sometimes never even diagnosed as such. Still they can develop PPS. For many years (and probably even now) polio was much better known by physicians than CMT. Some of the symptoms are so similar that it is often what the doctor often thinks of first. Especially if there is no known CMT in the family, it is something that must be ruled out. ----- Original Message ----- From: Maxwell Sent: Friday, May 18, 2001 05:07 PM Subject: Re: [] Re: Joint problems -----Original Message----- From: mel2mars@... <mel2mars@...> < > Date: Friday, May 18, 2001 2:35 PM Subject: [] Re: Joint problems >Melody; you mention post-polio, is similar. >> > >Hi Lee, > Not that the diseases are similar, >>>>>>If not similar, then why are so many mis-diagnosed as having polio or post polio syndrome, when they really have CMT. ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 -----Original Message----- From: Lamar son <lls@...> < > Date: Friday, May 18, 2001 4:28 PM Subject: Re: [] Re: Joint problems >>>>>>>So they are similar. ~>B >Becky, >Lamar here, > >Polio is caused by a virus but is almost no longer around. Post polio >syndrome is a neuropathy that people that had polio develop, sometimes years >later and sometimes only a short time after the actual infection. It has >many of the same symptoms of CMT. There were many that had polio and had a >very mild case that was sometimes never even diagnosed as such. Still they >can develop PPS. For many years (and probably even now) polio was much >better known by physicians than CMT. Some of the symptoms are so similar >that it is often what the doctor often thinks of first. Especially if >there is no known CMT in the family, it is something that must be ruled out. > ----- Original Message ----- > From: Maxwell > > Sent: Friday, May 18, 2001 05:07 PM > Subject: Re: [] Re: Joint problems > > > > -----Original Message----- > From: mel2mars@... <mel2mars@...> > < > > Date: Friday, May 18, 2001 2:35 PM > Subject: [] Re: Joint problems > > > >Melody; you mention post-polio, is similar. >> > > > >Hi Lee, > > Not that the diseases are similar, > > >>>>>>If not similar, then why are so many mis-diagnosed as having polio >or > post polio syndrome, when they really have CMT. ~>Becky M. > > > Quote Link to comment Share on other sites More sharing options...
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