Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 -----Original Message----- From: rebecca.dry@... <rebecca.dry@...> < > Date: Monday, August 20, 2001 8:17 AM Subject: [] Hereditary? ADVICE PLEASE .. >>Hi Beki, welcome, yes CMT is hereditary. Yes you could have it even without showing symptoms. Here are a few sites with good information on CMT. Also check out our bookmarks section at , lost of CMT and related information there. ~>Becky M. http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html >> http://www.oandp.org/jpo/64/64108.asp http://www.ultranet.com/~smith/files/CMTFactSheetAustralia.txt http://www.ultranet.com/~smith/CMTnet.html : http://www.geneclinics.org/profiles/cmt/ http://www2.mc.duke.edu/depts/medicine/medgen/cmt.html Hi everyone, My mum has had CMT since the age of 12, she's 54 now and has lived a full life. My sister has mystenia gravis and we don't know if it's linked or not to my mum's CMT, they are doing tests to see and my sis (29) is pregnant so they are analysing the risks for the baby etc. I would like to know if CMT is hereditary as we have been poorly informed in the UK and my mum has been badly followed by doctors. I am 26 and have never shown any symptons of the disease but could I still get it or would I have had symptoms by now? Thanks very much Beki DRY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Beki, CMT is hereditary. The means of hereditary transmission depends on the type. The biggest majority of CMT types are " autosomally dominant " . That means EACH child of a parent with CMT has a 50% chance of inheriting it. Other types are " sex linked " where the sex of the parent with CMT as well as the child makes a difference in the probability. The last means of heredity is " autosomally recessive " where BOTH parents would have CMT for the child to have it, but the parents could be recessive and have no symptoms at all. This pattern is fairly uncommon. Myasthenia gravis is a totally different disease, but CMT has been diagnosed as it in error with some people. ----- Original Message ----- From: rebecca.dry@... Sent: Monday, August 20, 2001 09:24 AM Subject: [] Hereditary? ADVICE PLEASE Hi everyone, My mum has had CMT since the age of 12, she's 54 now and has lived a full life. My sister has mystenia gravis and we don't know if it's linked or not to my mum's CMT, they are doing tests to see and my sis (29) is pregnant so they are analysing the risks for the baby etc. I would like to know if CMT is hereditary as we have been poorly informed in the UK and my mum has been badly followed by doctors. I am 26 and have never shown any symptons of the disease but could I still get it or would I have had symptoms by now? Thanks very much Beki DRY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Hi Beki Welcome to the group. I'm Sue and I too, live in the UK in Shropshire. As the others have said CMT is hereditary. My father has a very mild case of it, my sister too. My own case is very severe I was born with full blown CMT, flat feet twisted feet and severe muscle wastage in my legs and am now in a wheelchair. My two eldest sons also have a mild case. I was interested when you said your mother had it since twelve was that when she was first diagnosed and if so do you know where or who diagnosed her. This is for my own curiosity as I still don't have a diagnosis but that's another story. Anyway again as the others have said you may have it or you may not. For many with CMT there are not aware of any symptoms and show none throughout their lives. For others it may just be a case of I've got feet like my Dad's etc. Incidentally I'm 40 so your Mum isn't that much older than me really. Finally one last question where about in the UK do you live? Again just curious. Take care and welcome Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer ----- Original Message ----- From: rebecca.dry@... Sent: Monday, August 20, 2001 2:24 PM Subject: [] Hereditary? ADVICE PLEASE Hi everyone, My mum has had CMT since the age of 12, she's 54 now and has lived a full life. My sister has mystenia gravis and we don't know if it's linked or not to my mum's CMT, they are doing tests to see and my sis (29) is pregnant so they are analysing the risks for the baby etc. I would like to know if CMT is hereditary as we have been poorly informed in the UK and my mum has been badly followed by doctors. I am 26 and have never shown any symptons of the disease but could I still get it or would I have had symptoms by now? Thanks very much Beki DRY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Hi Sue, We live in Hull. I actually live in Paris now. My mum was diagnosed by doctors in Hull when she was about 17 or 18 I think it was a specialist who recognised it. She had been loads of times before and they didn't know what it was. Fortunately my mum is not in a wheelchair and of course apart from not doing sport she manages quite well although it has deteriorated lately. She still works full time and drives etc. What still hasn't been answered for me is could I still become a CMT sufferer even though I have had no signs until now at the age of 26??? Thanks so much Love Beki > Hi Beki > Welcome to the group. I'm Sue and I too, live in the UK in Shropshire. > As the others have said CMT is hereditary. My father has a very mild case of it, my sister too. My own case is very severe I was born with full blown CMT, flat feet twisted feet and severe muscle wastage in my legs and am now in a wheelchair. My two eldest sons also have a mild case. > I was interested when you said your mother had it since twelve was that when she was first diagnosed and if so do you know where or who diagnosed her. This is for my own curiosity as I still don't have a diagnosis but that's another story. > Anyway again as the others have said you may have it or you may not. For many with CMT there are not aware of any symptoms and show none throughout their lives. For others it may just be a case of I've got feet like my Dad's etc. Incidentally I'm 40 so your Mum isn't that much older than me really. > Finally one last question where about in the UK do you live? Again just curious. > Take care and welcome > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > ----- Original Message ----- > From: rebecca.dry@l... > @y... > Sent: Monday, August 20, 2001 2:24 PM > Subject: [] Hereditary? ADVICE PLEASE > > > Hi everyone, > > My mum has had CMT since the age of 12, she's 54 now and has lived a > full life. > My sister has mystenia gravis and we don't know if it's linked or not > to my mum's CMT, they are doing tests to see and my sis (29) is > pregnant so they are analysing the risks for the baby etc. > I would like to know if CMT is hereditary as we have been poorly > informed in the UK and my mum has been badly followed by doctors. > I am 26 and have never shown any symptons of the disease but could I > still get it or would I have had symptoms by now? > > Thanks very much > > Beki DRY > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Thanks for your answer. I still would like to know if it is common to start having symptoms at my age? (26) or am I 'safe'? Thanks Beki > > -----Original Message----- > From: rebecca.dry@l... <rebecca.dry@l...> > @y... <@y...> > Date: Monday, August 20, 2001 8:17 AM > Subject: [] Hereditary? ADVICE PLEASE > .. > >>Hi Beki, welcome, yes CMT is hereditary. Yes you could have it even without showing symptoms. > Here are a few sites with good information on CMT. Also check out our bookmarks section at , lost of CMT and related information there. ~>Becky M. > http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html > >> > http://www.oandp.org/jpo/64/64108.asp > > http://www.ultranet.com/~smith/files/CMTFactSheetAustralia.txt > > http://www.ultranet.com/~smith/CMTnet.html > > : http://www.geneclinics.org/profiles/cmt/ > > http://www2.mc.duke.edu/depts/medicine/medgen/cmt.html > > Hi everyone, > > My mum has had CMT since the age of 12, she's 54 now and has lived a > full life. > My sister has mystenia gravis and we don't know if it's linked or not > to my mum's CMT, they are doing tests to see and my sis (29) is > pregnant so they are analysing the risks for the baby etc. > I would like to know if CMT is hereditary as we have been poorly > informed in the UK and my mum has been badly followed by doctors. > I am 26 and have never shown any symptons of the disease but could I > still get it or would I have had symptoms by now? > > Thanks very much > > Beki DRY > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Hi! thanks for answering. I am still wondering if I could still become a sufferer even though I have not shown any sighns yet? (26 years old) Thanks a lot Love Beki > Beki, > CMT is hereditary. The means of hereditary transmission depends on the > type. The biggest majority of CMT types are " autosomally dominant " . That > means EACH child of a parent with CMT has a 50% chance of inheriting it. > Other types are " sex linked " where the sex of the parent with CMT as well as > the child makes a difference in the probability. The last means of heredity > is " autosomally recessive " where BOTH parents would have CMT for the child > to have it, but the parents could be recessive and have no symptoms at all. > This pattern is fairly uncommon. > Myasthenia gravis is a totally different disease, but CMT has been diagnosed > as it in error with some people. > ----- Original Message ----- > From: rebecca.dry@l... > @y... > Sent: Monday, August 20, 2001 09:24 AM > Subject: [] Hereditary? ADVICE PLEASE > > > Hi everyone, > > My mum has had CMT since the age of 12, she's 54 now and has lived a > full life. > My sister has mystenia gravis and we don't know if it's linked or not > to my mum's CMT, they are doing tests to see and my sis (29) is > pregnant so they are analysing the risks for the baby etc. > I would like to know if CMT is hereditary as we have been poorly > informed in the UK and my mum has been badly followed by doctors. > I am 26 and have never shown any symptons of the disease but could I > still get it or would I have had symptoms by now? > > Thanks very much > > Beki DRY > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 -----Original Message----- From: rebecca.dry@... <rebecca.dry@...> < > Date: Monday, August 20, 2001 12:52 PM Subject: [] Re: Hereditary? ADVICE PLEASE Thanks for your answer. I still would like to know if it is common to start having symptoms at my age? (26) or am I 'safe'? Thanks Beki . >>>>>>Beki, yes it is " possible " at age 26. " Common " that depends, CMT depending upon the type can show up at any age. If a person has the CMT gene, they have it, and depending on the type can have symptoms at birth, or age 90. Also, example, 10 members of the same family with CMT, each person can show symptoms starting at different ages and each can have different sypmtoms, one may be so mild, they show no symptoms while another may use a wheelchair. CMT varies in symptoms, and rate of progression for each person. ~>Becky M. > > -----Original Message----- > From: rebecca.dry@l... <rebecca.dry@l...> > @y... <@y...> > Date: Monday, August 20, 2001 8:17 AM > Subject: [] Hereditary? ADVICE PLEASE > .. > >>Hi Beki, welcome, yes CMT is hereditary. Yes you could have it even without showing symptoms. > Here are a few sites with good information on CMT. Also check out our bookmarks section at , lost of CMT and related information there. ~>Becky M. > http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html > >> > http://www.oandp.org/jpo/64/64108.asp > > http://www.ultranet.com/~smith/files/CMTFactSheetAustralia.txt > > http://www.ultranet.com/~smith/CMTnet.html > > : http://www.geneclinics.org/profiles/cmt/ > > http://www2.mc.duke.edu/depts/medicine/medgen/cmt.html > > Hi everyone, > > My mum has had CMT since the age of 12, she's 54 now and has lived a > full life. > My sister has mystenia gravis and we don't know if it's linked or not > to my mum's CMT, they are doing tests to see and my sis (29) is > pregnant so they are analysing the risks for the baby etc. > I would like to know if CMT is hereditary as we have been poorly > informed in the UK and my mum has been badly followed by doctors. > I am 26 and have never shown any symptons of the disease but could I > still get it or would I have had symptoms by now? > > Thanks very much > > Beki DRY > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Hi Beki I know it's wrong but I do envy you living in Paris. I was there in 99 and had a wonderful few days. In June we were in Geneva and on Saturday we're going to Normandy for a few days. I adore France. When we were there in June we did bring home so estate agent brochures for Annecy a place we fell in love with - divine. Regarding whether you could have CMT yes, you could although you don't show any signs of it. However even if you do have it it doesn't mean to say you will show signs or you may do in later life. No one can really answer that question for you. Depending on the type of CMT your mother has there are tests available both Nerve tests and DNA tests for some types but no all. However as someone said earlier for most people if they don't show the signs until later in life they on the whole don't have serious problems at all. I did read somewhere that people who maybe weren't very good at sports but showed no signs of CMT could have the disease. I'm banking on that for my youngest son because the eldest two were hopeless at sports but my youngest has played in school teams and is both good and enjoys sports. CMT is very much an enigma no two people have exactly the same symptoms. I'm sorry I can't say to you you don't have it but on the hand I can't say you do have it. Just get on with your life and enjoy the beautiful city you live in. And as for Hull I remember driving over the Humber bridge one new years eve and driving along the riverbank as midnight struck and the boats all sounded their horns - brilliant. My husband was born in Cottingham, just round the corner. Take care and please do stay in touch Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Beki, Sorry to say that there is no one answer to that. Each person with CMT is different. Some show marked signs in early childhood. Others have shown little until much later in life. I know of one who has no marked symptoms until after 70. In my family most show few symptoms until their 30's, abut some have needed AFO's and surgery in childhood. Some go entirely through life with no more than " weak ankles " and still have CMT. If you have a type that can be tested for by DNA testing it will show it even if no symptoms are present. Often a nerve conduction velocity test will show changes that the individual may not have even noticed. So, sorry to say, it is entirely possible, unless DNA testing has ruled it out. ----- Original Message ----- From: rebecca.dry@... Sent: Monday, August 20, 2001 01:59 PM Subject: [] Re: Hereditary? ADVICE PLEASE Hi! thanks for answering. I am still wondering if I could still become a sufferer even though I have not shown any sighns yet? (26 years old) Thanks a lot Love Beki > Beki, > CMT is hereditary. The means of hereditary transmission depends on the > type. The biggest majority of CMT types are " autosomally dominant " . That > means EACH child of a parent with CMT has a 50% chance of inheriting it. > Other types are " sex linked " where the sex of the parent with CMT as well as > the child makes a difference in the probability. The last means of heredity > is " autosomally recessive " where BOTH parents would have CMT for the child > to have it, but the parents could be recessive and have no symptoms at all. > This pattern is fairly uncommon. > Myasthenia gravis is a totally different disease, but CMT has been diagnosed > as it in error with some people. > ----- Original Message ----- > From: rebecca.dry@l... > @y... > Sent: Monday, August 20, 2001 09:24 AM > Subject: [] Hereditary? ADVICE PLEASE > > > Hi everyone, > > My mum has had CMT since the age of 12, she's 54 now and has lived a > full life. > My sister has mystenia gravis and we don't know if it's linked or not > to my mum's CMT, they are doing tests to see and my sis (29) is > pregnant so they are analysing the risks for the baby etc. > I would like to know if CMT is hereditary as we have been poorly > informed in the UK and my mum has been badly followed by doctors. > I am 26 and have never shown any symptons of the disease but could I > still get it or would I have had symptoms by now? > > Thanks very much > > Beki DRY > > > > Quote Link to comment Share on other sites More sharing options...
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