Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Welcome Bill. I think you've come to the right place!! You should receive the info you are looking for. I wouldn't know of any doctors in your area since I live in Texas. I am 41 and just had soft tissue surgery done on one of my feet. I will have the other foot operated on in the near future. You do sound " head strong " ....gee I wouldn't know anything about that! HaHa! just ask my husband, family and friends. Anyway, welcome and good luck. R. Texas ----- Original Message ----- From: <BILL@...> <egroups> Sent: Tuesday, January 23, 2001 12:52 PM Subject: [] NEW POSTER > Hello to all, > > I found this site while surfing for CMT info. I was recently re- > diagnosed if you will during a routine physical. I am 42 years old. > Compared to many people with CMT, I seem to have mild symptoms. I > have the classic high arched feet and small calf muscles, skinny > ankles etc. Very little evidence of it in my hands. I was just > considered a clumsy child, always very athletic but never a fast > runner. I played Pop Warner football and Little Leauge baseball and > was always classified as the slow footed kid. In baseball I was > always a good hitter although I never hit anything but singles and > home runs, if it did not clear the fence it was always a long single. > > Played high school sports, solid but never a star. Continued playing > adult softball until recently, quit because it took too much time. > I have been a weightlifter for 25 years although I will never win the > Best Calves award. I am convinced that my weight training has kept my > symptoms mild. As I age I concentrate more and more on cardiovascular > fitness. Thank God for the Precor Elliptical trainer, its as close to > running as I will ever get. > > As a teenager I had surgery on my feet and ankles, this almost killed > me as I developed a pulmonary embolism. The surgery and subsequent > orthotics seemed to help me a bit but quite frankly I pretty much > ignored my condition and lost touch with my doctors. For the next 20 > years I did whatever I wanted physically and never saw a doctor. > > At the age of 35 I broke my left ankle quite severly playing > softball, the orthopedic surgeon who treated me was pretty familiar > with CMT and suggested I study up on it. I had my left ankle and foot > fused at this point. I never gave any thought to following up on the > CMT until about a year ago when I started experiencing tingling in my > feet. As your reading this you can see that I am stubborn, a little > stupid and spent most of my life in denial, however I have always > been the type of person who thrives on a challenge. When ever someone > tells me I can't do something I must prove them wrong. > > I am currently searching for a physician who is experienced with CMT > in the Los Angeles area. Any help here will be greatly appreciated. > My condition has caused me some anger and pain over the years but for > the most part I have just dealt with it. Sorry to be so long winded > and random here but I am glad I found a forum where the other > participants know where I am coming from. > > Thanks for listening. > Bill > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Welcome Bill I'm 47 yrs old, name is , live in Tenn. I've had CMT since around age 5, just didn't get it diagnosed. Have 2 grown children, oldest inherited CMT. Youngest shows no signs, although he has never been tested. Don't really think it's necessary. I've never been strong, like so many other CMTers, but tried to do things like anyone else. My childhood, although rough, was the strongest period of my life with CMT. Started having problems 10 yrs ago, finally had to have right foot fused in order to continue walking without braces. It's a decision that I would make again, if I were put in the same situation. Just hope the left foot holds out and I'm not in that situation again. Having trouble with left hip now, but still going. I think we are all the same in the group. We just don't give up easily. Hope you enjoy the group. Good luck with finding a doc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Thank you , what does the surgery hope to acomplish? (sp?) ----- Original Message ----- From: <lisarich.com@...> <egroups> Sent: Tuesday, January 23, 2001 11:47 AM Subject: Re: [] NEW POSTER > Welcome Bill. I think you've come to the right place!! You should receive > the info you are looking for. I wouldn't know of any doctors in your area > since I live in Texas. I am 41 and just had soft tissue surgery done on one > of my feet. I will have the other foot operated on in the near future. > > You do sound " head strong " ....gee I wouldn't know anything about that! > HaHa! just ask my husband, family and friends. Anyway, welcome and good > luck. > > R. > Texas > > ----- Original Message ----- > From: <BILL@...> > <egroups> > Sent: Tuesday, January 23, 2001 12:52 PM > Subject: [] NEW POSTER > > > > Hello to all, > > > > I found this site while surfing for CMT info. I was recently re- > > diagnosed if you will during a routine physical. I am 42 years old. > > Compared to many people with CMT, I seem to have mild symptoms. I > > have the classic high arched feet and small calf muscles, skinny > > ankles etc. Very little evidence of it in my hands. I was just > > considered a clumsy child, always very athletic but never a fast > > runner. I played Pop Warner football and Little Leauge baseball and > > was always classified as the slow footed kid. In baseball I was > > always a good hitter although I never hit anything but singles and > > home runs, if it did not clear the fence it was always a long single. > > > > Played high school sports, solid but never a star. Continued playing > > adult softball until recently, quit because it took too much time. > > I have been a weightlifter for 25 years although I will never win the > > Best Calves award. I am convinced that my weight training has kept my > > symptoms mild. As I age I concentrate more and more on cardiovascular > > fitness. Thank God for the Precor Elliptical trainer, its as close to > > running as I will ever get. > > > > As a teenager I had surgery on my feet and ankles, this almost killed > > me as I developed a pulmonary embolism. The surgery and subsequent > > orthotics seemed to help me a bit but quite frankly I pretty much > > ignored my condition and lost touch with my doctors. For the next 20 > > years I did whatever I wanted physically and never saw a doctor. > > > > At the age of 35 I broke my left ankle quite severly playing > > softball, the orthopedic surgeon who treated me was pretty familiar > > with CMT and suggested I study up on it. I had my left ankle and foot > > fused at this point. I never gave any thought to following up on the > > CMT until about a year ago when I started experiencing tingling in my > > feet. As your reading this you can see that I am stubborn, a little > > stupid and spent most of my life in denial, however I have always > > been the type of person who thrives on a challenge. When ever someone > > tells me I can't do something I must prove them wrong. > > > > I am currently searching for a physician who is experienced with CMT > > in the Los Angeles area. Any help here will be greatly appreciated. > > My condition has caused me some anger and pain over the years but for > > the most part I have just dealt with it. Sorry to be so long winded > > and random here but I am glad I found a forum where the other > > participants know where I am coming from. > > > > Thanks for listening. > > Bill > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Bill, Having CMT, I have extremely high arches and my achilles tendons are shortened (always have to wear a shoe with 1-1/2 " heel), and some dropping of the foot. Also I was walking on the outside of my feet (ankles roll). The surgeon lowered my arch, lengthened the achilles tendon, broke the bone to my big toe and placed a screw in it to hold the foot up. This all will/has caused me to now be more flat footed therefore making my foot more level and stable. I think you mentioned you had had your ankles fused. My surgery wasn't as invasive, but I might need to have fusion later down the road. Hope this helps you understand my situation. I'll be happy to answer any other questions. I see Gretchen has already supplied you with names of doctors in your area. She's a great person, and there are more wonderful people in this group. Good luck to you. R. Texas ----- Original Message ----- From: Bill , Digitec Security <BILL@...> <egroups> Sent: Tuesday, January 23, 2001 2:31 PM Subject: Re: [] NEW POSTER > Thank you , what does the surgery hope to acomplish? (sp?) > ----- Original Message ----- > From: <lisarich.com@...> > <egroups> > Sent: Tuesday, January 23, 2001 11:47 AM > Subject: Re: [] NEW POSTER > > > > Welcome Bill. I think you've come to the right place!! You should > receive > > the info you are looking for. I wouldn't know of any doctors in your area > > since I live in Texas. I am 41 and just had soft tissue surgery done on > one > > of my feet. I will have the other foot operated on in the near future. > > > > You do sound " head strong " ....gee I wouldn't know anything about that! > > HaHa! just ask my husband, family and friends. Anyway, welcome and good > > luck. > > > > R. > > Texas > > > > ----- Original Message ----- > > From: <BILL@...> > > <egroups> > > Sent: Tuesday, January 23, 2001 12:52 PM > > Subject: [] NEW POSTER > > > > > > > Hello to all, > > > > > > I found this site while surfing for CMT info. I was recently re- > > > diagnosed if you will during a routine physical. I am 42 years old. > > > Compared to many people with CMT, I seem to have mild symptoms. I > > > have the classic high arched feet and small calf muscles, skinny > > > ankles etc. Very little evidence of it in my hands. I was just > > > considered a clumsy child, always very athletic but never a fast > > > runner. I played Pop Warner football and Little Leauge baseball and > > > was always classified as the slow footed kid. In baseball I was > > > always a good hitter although I never hit anything but singles and > > > home runs, if it did not clear the fence it was always a long single. > > > > > > Played high school sports, solid but never a star. Continued playing > > > adult softball until recently, quit because it took too much time. > > > I have been a weightlifter for 25 years although I will never win the > > > Best Calves award. I am convinced that my weight training has kept my > > > symptoms mild. As I age I concentrate more and more on cardiovascular > > > fitness. Thank God for the Precor Elliptical trainer, its as close to > > > running as I will ever get. > > > > > > As a teenager I had surgery on my feet and ankles, this almost killed > > > me as I developed a pulmonary embolism. The surgery and subsequent > > > orthotics seemed to help me a bit but quite frankly I pretty much > > > ignored my condition and lost touch with my doctors. For the next 20 > > > years I did whatever I wanted physically and never saw a doctor. > > > > > > At the age of 35 I broke my left ankle quite severly playing > > > softball, the orthopedic surgeon who treated me was pretty familiar > > > with CMT and suggested I study up on it. I had my left ankle and foot > > > fused at this point. I never gave any thought to following up on the > > > CMT until about a year ago when I started experiencing tingling in my > > > feet. As your reading this you can see that I am stubborn, a little > > > stupid and spent most of my life in denial, however I have always > > > been the type of person who thrives on a challenge. When ever someone > > > tells me I can't do something I must prove them wrong. > > > > > > I am currently searching for a physician who is experienced with CMT > > > in the Los Angeles area. Any help here will be greatly appreciated. > > > My condition has caused me some anger and pain over the years but for > > > the most part I have just dealt with it. Sorry to be so long winded > > > and random here but I am glad I found a forum where the other > > > participants know where I am coming from. > > > > > > Thanks for listening. > > > Bill > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Thanks , My other question is a bit more personal and I respect your privacy if you do not wish to answer. Do you have children and if so have they inherited your CMT? I have a 19 year old son who has no sign of it. My girlfriend is pressing me hard for a ring and a baby. I certainly am leery of bringing a child in to this world who will have a disability etc. any thoughts? Thanks again. BC ----- Original Message ----- From: <lisarich.com@...> <egroups> Sent: Tuesday, January 23, 2001 2:07 PM Subject: Re: [] NEW POSTER > Bill, > > Having CMT, I have extremely high arches and my achilles tendons are > shortened (always have to wear a shoe with 1-1/2 " heel), and some dropping > of the foot. Also I was walking on the outside of my feet (ankles roll). > The surgeon lowered my arch, lengthened the achilles tendon, broke the bone > to my big toe and placed a screw in it to hold the foot up. This all > will/has caused me to now be more flat footed therefore making my foot more > level and stable. I think you mentioned you had had your ankles fused. My > surgery wasn't as invasive, but I might need to have fusion later down the > road. Hope this helps you understand my situation. I'll be happy to answer > any other questions. > > I see Gretchen has already supplied you with names of doctors in your area. > She's a great person, and there are more wonderful people in this group. > Good luck to you. > > R. > Texas > > ----- Original Message ----- > From: Bill , Digitec Security <BILL@...> > <egroups> > Sent: Tuesday, January 23, 2001 2:31 PM > Subject: Re: [] NEW POSTER > > > > Thank you , what does the surgery hope to acomplish? (sp?) > > ----- Original Message ----- > > From: <lisarich.com@...> > > <egroups> > > Sent: Tuesday, January 23, 2001 11:47 AM > > Subject: Re: [] NEW POSTER > > > > > > > Welcome Bill. I think you've come to the right place!! You should > > receive > > > the info you are looking for. I wouldn't know of any doctors in your > area > > > since I live in Texas. I am 41 and just had soft tissue surgery done on > > one > > > of my feet. I will have the other foot operated on in the near future. > > > > > > You do sound " head strong " ....gee I wouldn't know anything about that! > > > HaHa! just ask my husband, family and friends. Anyway, welcome and good > > > luck. > > > > > > R. > > > Texas > > > > > > ----- Original Message ----- > > > From: <BILL@...> > > > <egroups> > > > Sent: Tuesday, January 23, 2001 12:52 PM > > > Subject: [] NEW POSTER > > > > > > > > > > Hello to all, > > > > > > > > I found this site while surfing for CMT info. I was recently re- > > > > diagnosed if you will during a routine physical. I am 42 years old. > > > > Compared to many people with CMT, I seem to have mild symptoms. I > > > > have the classic high arched feet and small calf muscles, skinny > > > > ankles etc. Very little evidence of it in my hands. I was just > > > > considered a clumsy child, always very athletic but never a fast > > > > runner. I played Pop Warner football and Little Leauge baseball and > > > > was always classified as the slow footed kid. In baseball I was > > > > always a good hitter although I never hit anything but singles and > > > > home runs, if it did not clear the fence it was always a long single. > > > > > > > > Played high school sports, solid but never a star. Continued playing > > > > adult softball until recently, quit because it took too much time. > > > > I have been a weightlifter for 25 years although I will never win the > > > > Best Calves award. I am convinced that my weight training has kept my > > > > symptoms mild. As I age I concentrate more and more on cardiovascular > > > > fitness. Thank God for the Precor Elliptical trainer, its as close to > > > > running as I will ever get. > > > > > > > > As a teenager I had surgery on my feet and ankles, this almost killed > > > > me as I developed a pulmonary embolism. The surgery and subsequent > > > > orthotics seemed to help me a bit but quite frankly I pretty much > > > > ignored my condition and lost touch with my doctors. For the next 20 > > > > years I did whatever I wanted physically and never saw a doctor. > > > > > > > > At the age of 35 I broke my left ankle quite severly playing > > > > softball, the orthopedic surgeon who treated me was pretty familiar > > > > with CMT and suggested I study up on it. I had my left ankle and foot > > > > fused at this point. I never gave any thought to following up on the > > > > CMT until about a year ago when I started experiencing tingling in my > > > > feet. As your reading this you can see that I am stubborn, a little > > > > stupid and spent most of my life in denial, however I have always > > > > been the type of person who thrives on a challenge. When ever someone > > > > tells me I can't do something I must prove them wrong. > > > > > > > > I am currently searching for a physician who is experienced with CMT > > > > in the Los Angeles area. Any help here will be greatly appreciated. > > > > My condition has caused me some anger and pain over the years but for > > > > the most part I have just dealt with it. Sorry to be so long winded > > > > and random here but I am glad I found a forum where the other > > > > participants know where I am coming from. > > > > > > > > Thanks for listening. > > > > Bill > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Bill, Lamar here, If you have CMT of any type other than sex linked (CMTX) and one of the more rare autosomally recessive types, each child you father (male or female) stands a 50% chance of having CMT. If you have CMTX, your daughters will be carriers (but may have symptoms of varying degrees) and your sons will not have CMT. You will note that the 50% chance is for EACH child. As to your 19 y/o son, if he has not been tested he could still have CMT. Many individuals show no signs until well past that age. As to whether to have children, it is a personal decision we all must face. Good luck in your decisions. ----- Original Message ----- From: Bill , Digitec Security egroups Sent: Tuesday, January 23, 2001 06:26 PM Subject: Re: [] NEW POSTER Thanks , My other question is a bit more personal and I respect your privacy if you do not wish to answer. Do you have children and if so have they inherited your CMT? I have a 19 year old son who has no sign of it. My girlfriend is pressing me hard for a ring and a baby. I certainly am leery of bringing a child in to this world who will have a disability etc. any thoughts? Thanks again. BC ----- Original Message ----- From: <lisarich.com@...> <egroups> Sent: Tuesday, January 23, 2001 2:07 PM Subject: Re: [] NEW POSTER > Bill, > > Having CMT, I have extremely high arches and my achilles tendons are > shortened (always have to wear a shoe with 1-1/2 " heel), and some dropping > of the foot. Also I was walking on the outside of my feet (ankles roll). > The surgeon lowered my arch, lengthened the achilles tendon, broke the bone > to my big toe and placed a screw in it to hold the foot up. This all > will/has caused me to now be more flat footed therefore making my foot more > level and stable. I think you mentioned you had had your ankles fused. My > surgery wasn't as invasive, but I might need to have fusion later down the > road. Hope this helps you understand my situation. I'll be happy to answer > any other questions. > > I see Gretchen has already supplied you with names of doctors in your area. > She's a great person, and there are more wonderful people in this group. > Good luck to you. > > R. > Texas > > ----- Original Message ----- > From: Bill , Digitec Security <BILL@...> > <egroups> > Sent: Tuesday, January 23, 2001 2:31 PM > Subject: Re: [] NEW POSTER > > > > Thank you , what does the surgery hope to acomplish? (sp?) > > ----- Original Message ----- > > From: <lisarich.com@...> > > <egroups> > > Sent: Tuesday, January 23, 2001 11:47 AM > > Subject: Re: [] NEW POSTER > > > > > > > Welcome Bill. I think you've come to the right place!! You should > > receive > > > the info you are looking for. I wouldn't know of any doctors in your > area > > > since I live in Texas. I am 41 and just had soft tissue surgery done on > > one > > > of my feet. I will have the other foot operated on in the near future. > > > > > > You do sound " head strong " ....gee I wouldn't know anything about that! > > > HaHa! just ask my husband, family and friends. Anyway, welcome and good > > > luck. > > > > > > R. > > > Texas > > > > > > ----- Original Message ----- > > > From: <BILL@...> > > > <egroups> > > > Sent: Tuesday, January 23, 2001 12:52 PM > > > Subject: [] NEW POSTER > > > > > > > > > > Hello to all, > > > > > > > > I found this site while surfing for CMT info. I was recently re- > > > > diagnosed if you will during a routine physical. I am 42 years old. > > > > Compared to many people with CMT, I seem to have mild symptoms. I > > > > have the classic high arched feet and small calf muscles, skinny > > > > ankles etc. Very little evidence of it in my hands. I was just > > > > considered a clumsy child, always very athletic but never a fast > > > > runner. I played Pop Warner football and Little Leauge baseball and > > > > was always classified as the slow footed kid. In baseball I was > > > > always a good hitter although I never hit anything but singles and > > > > home runs, if it did not clear the fence it was always a long single. > > > > > > > > Played high school sports, solid but never a star. Continued playing > > > > adult softball until recently, quit because it took too much time. > > > > I have been a weightlifter for 25 years although I will never win the > > > > Best Calves award. I am convinced that my weight training has kept my > > > > symptoms mild. As I age I concentrate more and more on cardiovascular > > > > fitness. Thank God for the Precor Elliptical trainer, its as close to > > > > running as I will ever get. > > > > > > > > As a teenager I had surgery on my feet and ankles, this almost killed > > > > me as I developed a pulmonary embolism. The surgery and subsequent > > > > orthotics seemed to help me a bit but quite frankly I pretty much > > > > ignored my condition and lost touch with my doctors. For the next 20 > > > > years I did whatever I wanted physically and never saw a doctor. > > > > > > > > At the age of 35 I broke my left ankle quite severly playing > > > > softball, the orthopedic surgeon who treated me was pretty familiar > > > > with CMT and suggested I study up on it. I had my left ankle and foot > > > > fused at this point. I never gave any thought to following up on the > > > > CMT until about a year ago when I started experiencing tingling in my > > > > feet. As your reading this you can see that I am stubborn, a little > > > > stupid and spent most of my life in denial, however I have always > > > > been the type of person who thrives on a challenge. When ever someone > > > > tells me I can't do something I must prove them wrong. > > > > > > > > I am currently searching for a physician who is experienced with CMT > > > > in the Los Angeles area. Any help here will be greatly appreciated. > > > > My condition has caused me some anger and pain over the years but for > > > > the most part I have just dealt with it. Sorry to be so long winded > > > > and random here but I am glad I found a forum where the other > > > > participants know where I am coming from. > > > > > > > > Thanks for listening. > > > > Bill > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Bill, Yes, I have one child and he is 17 years old. I have never had him tested for CMT (blood or EMG). He is a toe walker (not severe), so I would venture to say he probably has CMT. I noticed a posting from Lamar giving you the vital statistic of passing on CMT. This should give you the scientific info regarding passing the disease on. **Please note** I was unaware when I became pregnant at age 24 that I or any of my family had CMT. We just knew we had funny looking feet. It is a personal choice whether to have children or not. I love my son more than life itself, but had I know what I know now; I'm not sure I would have had a child. Again, everyone has their own opinion. I would discuss this at great length with your girlfriend....the choice is yours. Just my thoughts. R. ----- Original Message ----- From: Bill , Digitec Security <BILL@...> <egroups> Sent: Tuesday, January 23, 2001 5:26 PM Subject: Re: [] NEW POSTER > Thanks , > My other question is a bit more personal and I respect your privacy if you > do not wish to answer. > Do you have children and if so have they inherited your CMT? I have a 19 > year old son who has no sign of it. My girlfriend is pressing me hard for a > ring and a baby. I certainly am leery of bringing a child in to this world > who will have a disability etc. any thoughts? > Thanks again. > BC > ----- Original Message ----- > From: <lisarich.com@...> > <egroups> > Sent: Tuesday, January 23, 2001 2:07 PM > Subject: Re: [] NEW POSTER > > > > Bill, > > > > Having CMT, I have extremely high arches and my achilles tendons are > > shortened (always have to wear a shoe with 1-1/2 " heel), and some > dropping > > of the foot. Also I was walking on the outside of my feet (ankles roll). > > The surgeon lowered my arch, lengthened the achilles tendon, broke the > bone > > to my big toe and placed a screw in it to hold the foot up. This all > > will/has caused me to now be more flat footed therefore making my foot > more > > level and stable. I think you mentioned you had had your ankles fused. > My > > surgery wasn't as invasive, but I might need to have fusion later down the > > road. Hope this helps you understand my situation. I'll be happy to > answer > > any other questions. > > > > I see Gretchen has already supplied you with names of doctors in your > area. > > She's a great person, and there are more wonderful people in this group. > > Good luck to you. > > > > R. > > Texas > > > > ----- Original Message ----- > > From: Bill , Digitec Security <BILL@...> > > <egroups> > > Sent: Tuesday, January 23, 2001 2:31 PM > > Subject: Re: [] NEW POSTER > > > > > > > Thank you , what does the surgery hope to acomplish? (sp?) > > > ----- Original Message ----- > > > From: <lisarich.com@...> > > > <egroups> > > > Sent: Tuesday, January 23, 2001 11:47 AM > > > Subject: Re: [] NEW POSTER > > > > > > > > > > Welcome Bill. I think you've come to the right place!! You should > > > receive > > > > the info you are looking for. I wouldn't know of any doctors in your > > area > > > > since I live in Texas. I am 41 and just had soft tissue surgery done > on > > > one > > > > of my feet. I will have the other foot operated on in the near > future. > > > > > > > > You do sound " head strong " ....gee I wouldn't know anything about that! > > > > HaHa! just ask my husband, family and friends. Anyway, welcome and > good > > > > luck. > > > > > > > > R. > > > > Texas > > > > > > > > ----- Original Message ----- > > > > From: <BILL@...> > > > > <egroups> > > > > Sent: Tuesday, January 23, 2001 12:52 PM > > > > Subject: [] NEW POSTER > > > > > > > > > > > > > Hello to all, > > > > > > > > > > I found this site while surfing for CMT info. I was recently re- > > > > > diagnosed if you will during a routine physical. I am 42 years old. > > > > > Compared to many people with CMT, I seem to have mild symptoms. I > > > > > have the classic high arched feet and small calf muscles, skinny > > > > > ankles etc. Very little evidence of it in my hands. I was just > > > > > considered a clumsy child, always very athletic but never a fast > > > > > runner. I played Pop Warner football and Little Leauge baseball and > > > > > was always classified as the slow footed kid. In baseball I was > > > > > always a good hitter although I never hit anything but singles and > > > > > home runs, if it did not clear the fence it was always a long > single. > > > > > > > > > > Played high school sports, solid but never a star. Continued playing > > > > > adult softball until recently, quit because it took too much time. > > > > > I have been a weightlifter for 25 years although I will never win > the > > > > > Best Calves award. I am convinced that my weight training has kept > my > > > > > symptoms mild. As I age I concentrate more and more on > cardiovascular > > > > > fitness. Thank God for the Precor Elliptical trainer, its as close > to > > > > > running as I will ever get. > > > > > > > > > > As a teenager I had surgery on my feet and ankles, this almost > killed > > > > > me as I developed a pulmonary embolism. The surgery and subsequent > > > > > orthotics seemed to help me a bit but quite frankly I pretty much > > > > > ignored my condition and lost touch with my doctors. For the next 20 > > > > > years I did whatever I wanted physically and never saw a doctor. > > > > > > > > > > At the age of 35 I broke my left ankle quite severly playing > > > > > softball, the orthopedic surgeon who treated me was pretty familiar > > > > > with CMT and suggested I study up on it. I had my left ankle and > foot > > > > > fused at this point. I never gave any thought to following up on the > > > > > CMT until about a year ago when I started experiencing tingling in > my > > > > > feet. As your reading this you can see that I am stubborn, a little > > > > > stupid and spent most of my life in denial, however I have always > > > > > been the type of person who thrives on a challenge. When ever > someone > > > > > tells me I can't do something I must prove them wrong. > > > > > > > > > > I am currently searching for a physician who is experienced with CMT > > > > > in the Los Angeles area. Any help here will be greatly appreciated. > > > > > My condition has caused me some anger and pain over the years but > for > > > > > the most part I have just dealt with it. Sorry to be so long winded > > > > > and random here but I am glad I found a forum where the other > > > > > participants know where I am coming from. > > > > > > > > > > Thanks for listening. > > > > > Bill > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Thanks for your info . Please know that I was not passing judgement on your decision to have a child, if that was the impression I gave you. BC ----- Original Message ----- From: <lisarich.com@...> <egroups> Sent: Tuesday, January 23, 2001 6:33 PM Subject: Re: [] NEW POSTER > Bill, > > Yes, I have one child and he is 17 years old. I have never had him tested > for CMT (blood or EMG). He is a toe walker (not severe), so I would venture > to say he probably has CMT. > > I noticed a posting from Lamar giving you the vital statistic of passing on > CMT. This should give you the scientific info regarding passing the disease > on. **Please note** I was unaware when I became pregnant at age 24 that I > or any of my family had CMT. We just knew we had funny looking feet. It is > a personal choice whether to have children or not. I love my son more than > life itself, but had I know what I know now; I'm not sure I would have had a > child. Again, everyone has their own opinion. I would discuss this at > great length with your girlfriend....the choice is yours. Just my thoughts. > > R. > > ----- Original Message ----- > From: Bill , Digitec Security <BILL@...> > <egroups> > Sent: Tuesday, January 23, 2001 5:26 PM > Subject: Re: [] NEW POSTER > > > > Thanks , > > My other question is a bit more personal and I respect your privacy if you > > do not wish to answer. > > Do you have children and if so have they inherited your CMT? I have a 19 > > year old son who has no sign of it. My girlfriend is pressing me hard for > a > > ring and a baby. I certainly am leery of bringing a child in to this world > > who will have a disability etc. any thoughts? > > Thanks again. > > BC > > ----- Original Message ----- > > From: <lisarich.com@...> > > <egroups> > > Sent: Tuesday, January 23, 2001 2:07 PM > > Subject: Re: [] NEW POSTER > > > > > > > Bill, > > > > > > Having CMT, I have extremely high arches and my achilles tendons are > > > shortened (always have to wear a shoe with 1-1/2 " heel), and some > > dropping > > > of the foot. Also I was walking on the outside of my feet (ankles > roll). > > > The surgeon lowered my arch, lengthened the achilles tendon, broke the > > bone > > > to my big toe and placed a screw in it to hold the foot up. This all > > > will/has caused me to now be more flat footed therefore making my foot > > more > > > level and stable. I think you mentioned you had had your ankles fused. > > My > > > surgery wasn't as invasive, but I might need to have fusion later down > the > > > road. Hope this helps you understand my situation. I'll be happy to > > answer > > > any other questions. > > > > > > I see Gretchen has already supplied you with names of doctors in your > > area. > > > She's a great person, and there are more wonderful people in this group. > > > Good luck to you. > > > > > > R. > > > Texas > > > > > > ----- Original Message ----- > > > From: Bill , Digitec Security <BILL@...> > > > <egroups> > > > Sent: Tuesday, January 23, 2001 2:31 PM > > > Subject: Re: [] NEW POSTER > > > > > > > > > > Thank you , what does the surgery hope to acomplish? (sp?) > > > > ----- Original Message ----- > > > > From: <lisarich.com@...> > > > > <egroups> > > > > Sent: Tuesday, January 23, 2001 11:47 AM > > > > Subject: Re: [] NEW POSTER > > > > > > > > > > > > > Welcome Bill. I think you've come to the right place!! You should > > > > receive > > > > > the info you are looking for. I wouldn't know of any doctors in > your > > > area > > > > > since I live in Texas. I am 41 and just had soft tissue surgery > done > > on > > > > one > > > > > of my feet. I will have the other foot operated on in the near > > future. > > > > > > > > > > You do sound " head strong " ....gee I wouldn't know anything about > that! > > > > > HaHa! just ask my husband, family and friends. Anyway, welcome and > > good > > > > > luck. > > > > > > > > > > R. > > > > > Texas > > > > > > > > > > ----- Original Message ----- > > > > > From: <BILL@...> > > > > > <egroups> > > > > > Sent: Tuesday, January 23, 2001 12:52 PM > > > > > Subject: [] NEW POSTER > > > > > > > > > > > > > > > > Hello to all, > > > > > > > > > > > > I found this site while surfing for CMT info. I was recently re- > > > > > > diagnosed if you will during a routine physical. I am 42 years > old. > > > > > > Compared to many people with CMT, I seem to have mild symptoms. I > > > > > > have the classic high arched feet and small calf muscles, skinny > > > > > > ankles etc. Very little evidence of it in my hands. I was just > > > > > > considered a clumsy child, always very athletic but never a fast > > > > > > runner. I played Pop Warner football and Little Leauge baseball > and > > > > > > was always classified as the slow footed kid. In baseball I was > > > > > > always a good hitter although I never hit anything but singles and > > > > > > home runs, if it did not clear the fence it was always a long > > single. > > > > > > > > > > > > Played high school sports, solid but never a star. Continued > playing > > > > > > adult softball until recently, quit because it took too much time. > > > > > > I have been a weightlifter for 25 years although I will never win > > the > > > > > > Best Calves award. I am convinced that my weight training has kept > > my > > > > > > symptoms mild. As I age I concentrate more and more on > > cardiovascular > > > > > > fitness. Thank God for the Precor Elliptical trainer, its as close > > to > > > > > > running as I will ever get. > > > > > > > > > > > > As a teenager I had surgery on my feet and ankles, this almost > > killed > > > > > > me as I developed a pulmonary embolism. The surgery and subsequent > > > > > > orthotics seemed to help me a bit but quite frankly I pretty much > > > > > > ignored my condition and lost touch with my doctors. For the next > 20 > > > > > > years I did whatever I wanted physically and never saw a doctor. > > > > > > > > > > > > At the age of 35 I broke my left ankle quite severly playing > > > > > > softball, the orthopedic surgeon who treated me was pretty > familiar > > > > > > with CMT and suggested I study up on it. I had my left ankle and > > foot > > > > > > fused at this point. I never gave any thought to following up on > the > > > > > > CMT until about a year ago when I started experiencing tingling in > > my > > > > > > feet. As your reading this you can see that I am stubborn, a > little > > > > > > stupid and spent most of my life in denial, however I have always > > > > > > been the type of person who thrives on a challenge. When ever > > someone > > > > > > tells me I can't do something I must prove them wrong. > > > > > > > > > > > > I am currently searching for a physician who is experienced with > CMT > > > > > > in the Los Angeles area. Any help here will be greatly > appreciated. > > > > > > My condition has caused me some anger and pain over the years but > > for > > > > > > the most part I have just dealt with it. Sorry to be so long > winded > > > > > > and random here but I am glad I found a forum where the other > > > > > > participants know where I am coming from. > > > > > > > > > > > > Thanks for listening. > > > > > > Bill > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Thanks . ----- Original Message ----- From: <ktbugg54@...> <egroups> Sent: Tuesday, January 23, 2001 4:49 PM Subject: Re: [] NEW POSTER > Welcome Bill > I'm 47 yrs old, name is , live in Tenn. I've had CMT since around age 5, > just didn't get it diagnosed. Have 2 grown children, oldest inherited CMT. > Youngest shows no signs, although he has never been tested. Don't really > think it's necessary. I've never been strong, like so many other CMTers, but > tried to do things like anyone else. My childhood, although rough, was the > strongest period of my life with CMT. Started having problems 10 yrs ago, > finally had to have right foot fused in order to continue walking without > braces. It's a decision that I would make again, if I were put in the same > situation. Just hope the left foot holds out and I'm not in that situation > again. > Having trouble with left hip now, but still going. I think we are all the > same in the group. We just don't give up easily. > Hope you enjoy the group. Good luck with finding a doc. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Bill, No offense taken. I figured with my reply I would open up a can of worms with some members. But again, I believe it is each individuals choice. Have a great day! ----- Original Message ----- From: Bill , Digitec Security <BILL@...> <egroups> Sent: Wednesday, January 24, 2001 10:37 AM Subject: Re: [] NEW POSTER > Thanks for your info . Please know that I was not passing judgement on > your decision to have a child, if that was the impression I gave you. > BC > ----- Original Message ----- > From: <lisarich.com@...> > <egroups> > Sent: Tuesday, January 23, 2001 6:33 PM > Subject: Re: [] NEW POSTER > > > > Bill, > > > > Yes, I have one child and he is 17 years old. I have never had him tested > > for CMT (blood or EMG). He is a toe walker (not severe), so I would > venture > > to say he probably has CMT. > > > > I noticed a posting from Lamar giving you the vital statistic of passing > on > > CMT. This should give you the scientific info regarding passing the > disease > > on. **Please note** I was unaware when I became pregnant at age 24 that > I > > or any of my family had CMT. We just knew we had funny looking feet. It > is > > a personal choice whether to have children or not. I love my son more > than > > life itself, but had I know what I know now; I'm not sure I would have had > a > > child. Again, everyone has their own opinion. I would discuss this at > > great length with your girlfriend....the choice is yours. Just my > thoughts. > > > > R. > > > > ----- Original Message ----- > > From: Bill , Digitec Security <BILL@...> > > <egroups> > > Sent: Tuesday, January 23, 2001 5:26 PM > > Subject: Re: [] NEW POSTER > > > > > > > Thanks , > > > My other question is a bit more personal and I respect your privacy if > you > > > do not wish to answer. > > > Do you have children and if so have they inherited your CMT? I have a 19 > > > year old son who has no sign of it. My girlfriend is pressing me hard > for > > a > > > ring and a baby. I certainly am leery of bringing a child in to this > world > > > who will have a disability etc. any thoughts? > > > Thanks again. > > > BC > > > ----- Original Message ----- > > > From: <lisarich.com@...> > > > <egroups> > > > Sent: Tuesday, January 23, 2001 2:07 PM > > > Subject: Re: [] NEW POSTER > > > > > > > > > > Bill, > > > > > > > > Having CMT, I have extremely high arches and my achilles tendons are > > > > shortened (always have to wear a shoe with 1-1/2 " heel), and some > > > dropping > > > > of the foot. Also I was walking on the outside of my feet (ankles > > roll). > > > > The surgeon lowered my arch, lengthened the achilles tendon, broke the > > > bone > > > > to my big toe and placed a screw in it to hold the foot up. This all > > > > will/has caused me to now be more flat footed therefore making my foot > > > more > > > > level and stable. I think you mentioned you had had your ankles > fused. > > > My > > > > surgery wasn't as invasive, but I might need to have fusion later down > > the > > > > road. Hope this helps you understand my situation. I'll be happy to > > > answer > > > > any other questions. > > > > > > > > I see Gretchen has already supplied you with names of doctors in your > > > area. > > > > She's a great person, and there are more wonderful people in this > group. > > > > Good luck to you. > > > > > > > > R. > > > > Texas > > > > > > > > ----- Original Message ----- > > > > From: Bill , Digitec Security <BILL@...> > > > > <egroups> > > > > Sent: Tuesday, January 23, 2001 2:31 PM > > > > Subject: Re: [] NEW POSTER > > > > > > > > > > > > > Thank you , what does the surgery hope to acomplish? (sp?) > > > > > ----- Original Message ----- > > > > > From: <lisarich.com@...> > > > > > <egroups> > > > > > Sent: Tuesday, January 23, 2001 11:47 AM > > > > > Subject: Re: [] NEW POSTER > > > > > > > > > > > > > > > > Welcome Bill. I think you've come to the right place!! You > should > > > > > receive > > > > > > the info you are looking for. I wouldn't know of any doctors in > > your > > > > area > > > > > > since I live in Texas. I am 41 and just had soft tissue surgery > > done > > > on > > > > > one > > > > > > of my feet. I will have the other foot operated on in the near > > > future. > > > > > > > > > > > > You do sound " head strong " ....gee I wouldn't know anything about > > that! > > > > > > HaHa! just ask my husband, family and friends. Anyway, welcome > and > > > good > > > > > > luck. > > > > > > > > > > > > R. > > > > > > Texas > > > > > > > > > > > > ----- Original Message ----- > > > > > > From: <BILL@...> > > > > > > <egroups> > > > > > > Sent: Tuesday, January 23, 2001 12:52 PM > > > > > > Subject: [] NEW POSTER > > > > > > > > > > > > > > > > > > > Hello to all, > > > > > > > > > > > > > > I found this site while surfing for CMT info. I was recently re- > > > > > > > diagnosed if you will during a routine physical. I am 42 years > > old. > > > > > > > Compared to many people with CMT, I seem to have mild symptoms. > I > > > > > > > have the classic high arched feet and small calf muscles, skinny > > > > > > > ankles etc. Very little evidence of it in my hands. I was just > > > > > > > considered a clumsy child, always very athletic but never a fast > > > > > > > runner. I played Pop Warner football and Little Leauge baseball > > and > > > > > > > was always classified as the slow footed kid. In baseball I was > > > > > > > always a good hitter although I never hit anything but singles > and > > > > > > > home runs, if it did not clear the fence it was always a long > > > single. > > > > > > > > > > > > > > Played high school sports, solid but never a star. Continued > > playing > > > > > > > adult softball until recently, quit because it took too much > time. > > > > > > > I have been a weightlifter for 25 years although I will never > win > > > the > > > > > > > Best Calves award. I am convinced that my weight training has > kept > > > my > > > > > > > symptoms mild. As I age I concentrate more and more on > > > cardiovascular > > > > > > > fitness. Thank God for the Precor Elliptical trainer, its as > close > > > to > > > > > > > running as I will ever get. > > > > > > > > > > > > > > As a teenager I had surgery on my feet and ankles, this almost > > > killed > > > > > > > me as I developed a pulmonary embolism. The surgery and > subsequent > > > > > > > orthotics seemed to help me a bit but quite frankly I pretty > much > > > > > > > ignored my condition and lost touch with my doctors. For the > next > > 20 > > > > > > > years I did whatever I wanted physically and never saw a doctor. > > > > > > > > > > > > > > At the age of 35 I broke my left ankle quite severly playing > > > > > > > softball, the orthopedic surgeon who treated me was pretty > > familiar > > > > > > > with CMT and suggested I study up on it. I had my left ankle and > > > foot > > > > > > > fused at this point. I never gave any thought to following up on > > the > > > > > > > CMT until about a year ago when I started experiencing tingling > in > > > my > > > > > > > feet. As your reading this you can see that I am stubborn, a > > little > > > > > > > stupid and spent most of my life in denial, however I have > always > > > > > > > been the type of person who thrives on a challenge. When ever > > > someone > > > > > > > tells me I can't do something I must prove them wrong. > > > > > > > > > > > > > > I am currently searching for a physician who is experienced with > > CMT > > > > > > > in the Los Angeles area. Any help here will be greatly > > appreciated. > > > > > > > My condition has caused me some anger and pain over the years > but > > > for > > > > > > > the most part I have just dealt with it. Sorry to be so long > > winded > > > > > > > and random here but I am glad I found a forum where the other > > > > > > > participants know where I am coming from. > > > > > > > > > > > > > > Thanks for listening. > > > > > > > Bill > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 Hi Bill , here I am new to this group also and have been in a debate on this subject for a while. Jeff and I have 2 children, Raven 6(has CMT) Justice5 (doesn't). I was only diagnosed a little less than 2 years go and really had no knowledge of it in our family. Now I am 26 and am going to staying on disability and have all the time in the world to raise another child. It is hard to decide whether or not to have another because of the strain it will be on my body and the chance of the child having CMT. I have Raven with CMT and she is a joy, she keeps life a joy even with troubles. She is the happiest ;most well adjusted child and I would be blessed to have another child just like her, but what if the next childs is far more severe. We just don't know what to do? We are fortunate to have the children we do, but have so much love and time to give to another child. I agree it is the individuals choice but other peoples opinions and the thoughts they may think about that you may not even have considered that may help in this decision. My mom never new of this disease in our family as she was tested after I was, but I don't feel agree towards her. I am glad to be here and do the best I can with my life. If she new she had the disease she probably would've had me anyways. That is a hard question to answer because it is too late now, it is the moment when you are deciding with the knowledge you have at the time. I do believe that if you are debating about adopting because you have CMT that there is a lot worse out there and you will have no family history or anything to help that child along the way. Atleast with CMT you already have a good understanding of the disease and can go from there. The DNA testing is terrible in my mind because you can't tell the severity, do you want to give up a childs life because it has CMT. The baby could show no signs all of its life and never be any different than anybody else other than an extra chromosone. I personal know if we get pregnant I would not get the test done because Raven is such a joy and just like any other child it would be such a waste of a life to give something so precious up. Sorry to sound so opinionated but I have thought about all these for about 8 months know and am trying to come to a decision myself. ----- Original Message ----- From: Bill , Digitec Security <BILL@...> <egroups> Sent: Tuesday, January 23, 2001 3:26 PM Subject: Re: [] NEW POSTER > Thanks , > My other question is a bit more personal and I respect your privacy if you > do not wish to answer. > Do you have children and if so have they inherited your CMT? I have a 19 > year old son who has no sign of it. My girlfriend is pressing me hard for a > ring and a baby. I certainly am leery of bringing a child in to this world > who will have a disability etc. any thoughts? > Thanks again. > BC > ----- Original Message ----- > From: <lisarich.com@...> > <egroups> > Sent: Tuesday, January 23, 2001 2:07 PM > Subject: Re: [] NEW POSTER > > > > Bill, > > > > Having CMT, I have extremely high arches and my achilles tendons are > > shortened (always have to wear a shoe with 1-1/2 " heel), and some > dropping > > of the foot. Also I was walking on the outside of my feet (ankles roll). > > The surgeon lowered my arch, lengthened the achilles tendon, broke the > bone > > to my big toe and placed a screw in it to hold the foot up. This all > > will/has caused me to now be more flat footed therefore making my foot > more > > level and stable. I think you mentioned you had had your ankles fused. > My > > surgery wasn't as invasive, but I might need to have fusion later down the > > road. Hope this helps you understand my situation. I'll be happy to > answer > > any other questions. > > > > I see Gretchen has already supplied you with names of doctors in your > area. > > She's a great person, and there are more wonderful people in this group. > > Good luck to you. > > > > R. > > Texas > > > > ----- Original Message ----- > > From: Bill , Digitec Security <BILL@...> > > <egroups> > > Sent: Tuesday, January 23, 2001 2:31 PM > > Subject: Re: [] NEW POSTER > > > > > > > Thank you , what does the surgery hope to acomplish? (sp?) > > > ----- Original Message ----- > > > From: <lisarich.com@...> > > > <egroups> > > > Sent: Tuesday, January 23, 2001 11:47 AM > > > Subject: Re: [] NEW POSTER > > > > > > > > > > Welcome Bill. I think you've come to the right place!! You should > > > receive > > > > the info you are looking for. I wouldn't know of any doctors in your > > area > > > > since I live in Texas. I am 41 and just had soft tissue surgery done > on > > > one > > > > of my feet. I will have the other foot operated on in the near > future. > > > > > > > > You do sound " head strong " ....gee I wouldn't know anything about that! > > > > HaHa! just ask my husband, family and friends. Anyway, welcome and > good > > > > luck. > > > > > > > > R. > > > > Texas > > > > > > > > ----- Original Message ----- > > > > From: <BILL@...> > > > > <egroups> > > > > Sent: Tuesday, January 23, 2001 12:52 PM > > > > Subject: [] NEW POSTER > > > > > > > > > > > > > Hello to all, > > > > > > > > > > I found this site while surfing for CMT info. I was recently re- > > > > > diagnosed if you will during a routine physical. I am 42 years old. > > > > > Compared to many people with CMT, I seem to have mild symptoms. I > > > > > have the classic high arched feet and small calf muscles, skinny > > > > > ankles etc. Very little evidence of it in my hands. I was just > > > > > considered a clumsy child, always very athletic but never a fast > > > > > runner. I played Pop Warner football and Little Leauge baseball and > > > > > was always classified as the slow footed kid. In baseball I was > > > > > always a good hitter although I never hit anything but singles and > > > > > home runs, if it did not clear the fence it was always a long > single. > > > > > > > > > > Played high school sports, solid but never a star. Continued playing > > > > > adult softball until recently, quit because it took too much time. > > > > > I have been a weightlifter for 25 years although I will never win > the > > > > > Best Calves award. I am convinced that my weight training has kept > my > > > > > symptoms mild. As I age I concentrate more and more on > cardiovascular > > > > > fitness. Thank God for the Precor Elliptical trainer, its as close > to > > > > > running as I will ever get. > > > > > > > > > > As a teenager I had surgery on my feet and ankles, this almost > killed > > > > > me as I developed a pulmonary embolism. The surgery and subsequent > > > > > orthotics seemed to help me a bit but quite frankly I pretty much > > > > > ignored my condition and lost touch with my doctors. For the next 20 > > > > > years I did whatever I wanted physically and never saw a doctor. > > > > > > > > > > At the age of 35 I broke my left ankle quite severly playing > > > > > softball, the orthopedic surgeon who treated me was pretty familiar > > > > > with CMT and suggested I study up on it. I had my left ankle and > foot > > > > > fused at this point. I never gave any thought to following up on the > > > > > CMT until about a year ago when I started experiencing tingling in > my > > > > > feet. As your reading this you can see that I am stubborn, a little > > > > > stupid and spent most of my life in denial, however I have always > > > > > been the type of person who thrives on a challenge. When ever > someone > > > > > tells me I can't do something I must prove them wrong. > > > > > > > > > > I am currently searching for a physician who is experienced with CMT > > > > > in the Los Angeles area. Any help here will be greatly appreciated. > > > > > My condition has caused me some anger and pain over the years but > for > > > > > the most part I have just dealt with it. Sorry to be so long winded > > > > > and random here but I am glad I found a forum where the other > > > > > participants know where I am coming from. > > > > > > > > > > Thanks for listening. > > > > > Bill > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 Dear , My heart goes out to you. Please be careful with your 7 month old. Babies have died from bleeding lungs due to Staccy. I have been sick for a year but it was from work. I just have gotten worse. I too cannot tolerate odors. Mine is Federal and from the Senators of my state and the Commander of the Shipyard to the President, no one seems to care and laughs it off. I wear a 3 m mask outside as I smell mold in the wet dirt and get asthma I never had before. I just had to leave an apartment because the landlord didn't want to be responsible for my health when I began to smell a sewer smell.He kept all my money so I am taking him to small claims court.My "significant " other couldnt handle the illness and upset me then called the police to take me away. He didnt understand I needed love and support. This was a many years relationship. I call and he ignores. Sometimes I feel like a moldy leper. I am pretty much housebound with air cleaners and they want me to take disability which is 40 percent of my pay. Im a 39 year old single Mom with a daughter starting college this year. But they want me gone so everything is covered up. Anyway, sorry to go on, but I understand your frustration and the people here in this group are friendly and helpful. I ask questions and people answer. It is run by a great moderator. I send Best wishes and God Bless. I know it is easy to say "leave" but in reality that's hard to do. Be careful of the little one as well as yourselves. God Bless, Janet Below is where I worked. Quote Link to comment Share on other sites More sharing options...
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