Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Jim here; Give 'em hell Sue, couldn't agree more. As Oliver Cromwell said " Put your trust in God m'lads but keep your powder dry " . Jim Nash --- Sue Horder-Mason <sue@...> wrote: > To all of us CMTers > CMT has been known about for over a hundred years > and yet even today people are being misdiagnosed > despite having family history etc. > This really really makes me angry. My own life has > been 'ruined' through misdiagnosis as have many of > yours. We need to stick together on this because > although for many of us it's too late to do anything > our children and our grandchildren are relying on us > - to make a better world for them. > This isn't politcal but we can't sit back and rely > on doctors many of whom don't know anything about > CMT or who know little enough that they are > dangerous to us. > And for those of us who they say don't match up to > classic CMT symptoms remind your doctors there are > 53 acknowledged types of CMT 51-52 types they don't > even know about. > CMT is the most common form of inherited > neurological disease there is. 1 in 2500 people have > it and that is common. > Come on guys let's stick together, let's make these > doctors listen and more importantly force them to > learn rather than passing down outdated thoughts and > ideas. Remember one doctor said to one of our group > 'oh yes CMT that has something to do with syphilis.' > Need I say more? > Love and hugs to everyone > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I > have found myself, my work, and my God. " - Helen > Keller > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2001 Report Share Posted December 19, 2001 Oh Jim you're wonderful. I laughed when I read your post - and laughter is wonderful especially when your thoughts are murderous. Love and hugs Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: jim nash Sent: Wednesday, December 19, 2001 10:34 PM Subject: Re: [] Now I'm getting angry Jim here; Give 'em hell Sue, couldn't agree more. As Oliver Cromwell said " Put your trust in God m'lads but keep your powder dry " . Jim Nash --- Sue Horder-Mason <sue@...> wrote: > To all of us CMTers > CMT has been known about for over a hundred years > and yet even today people are being misdiagnosed > despite having family history etc. > This really really makes me angry. My own life has > been 'ruined' through misdiagnosis as have many of > yours. We need to stick together on this because > although for many of us it's too late to do anything > our children and our grandchildren are relying on us > - to make a better world for them. > This isn't politcal but we can't sit back and rely > on doctors many of whom don't know anything about > CMT or who know little enough that they are > dangerous to us. > And for those of us who they say don't match up to > classic CMT symptoms remind your doctors there are > 53 acknowledged types of CMT 51-52 types they don't > even know about. > CMT is the most common form of inherited > neurological disease there is. 1 in 2500 people have > it and that is common. > Come on guys let's stick together, let's make these > doctors listen and more importantly force them to > learn rather than passing down outdated thoughts and > ideas. Remember one doctor said to one of our group > 'oh yes CMT that has something to do with syphilis.' > Need I say more? > Love and hugs to everyone > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > " I Thank God for my handicaps, for through them, I > have found myself, my work, and my God. " - Helen > Keller > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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