Guest guest Posted March 22, 1999 Report Share Posted March 22, 1999 our andrew (12 y.o.) was dx with eg in january, and a biopsy we had in earyl march led our dr to say he wasnt sure. andrew is not responding to steroids and gastrocrom as the dr wished. but the dr never mentioned neocate. so we are now at the u of minn with an immunologist that started him on neocate 1 plus, but no mention of foods to avoid. we are also seeing a diff g.i. dr at the u of minnesota. does anyone on the list know of doctors in the twin cities, chicago or elsewhere? also, i read in archives of elevated Ige assoc with eg. andrew's IgE is from 5-8,000. does anyone think it is due to food? that's what my husband and i think, but it is so hard to tell a child that he cant eat. he cries all the time. he used to be healthy and happy. i just dont get it. thank you all for being there. patty (andrews mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 << " Are you nervous? Why are you shaking? " This is the second time this month I have had someone I didnt know ask me this. >> I find it soooo hard to understand why people - I assume you are talking about adults - don't recognize a medical condition when they see it. How old are these people? Surely not over 60. I remember knowing people with tremors all my life, and knowing it would not be polite to stare, let alone to comment. (No, not CMTers with tremors, just common people.) My earliest memory in my life was my kindergarten teacher, Miss Freestat. She had white hair, and she had a pronounced tremor in her hands. When we left each day she would take our heads in her hands and try to kiss the tops of our heads. It was quite a daily experience, but even we 4 and 5 year olds knew better than to comment. It was just part of life. We knew when it would be rude to say anything personal. It simply was not done. I can't believe any of my peers would be rude as adults. On the other hand, my mother-in-law was a terror about that. She would say whatever she wanted to about anyone she saw, be it a friend, a stranger or a relative, and she chose not to believe her comments would hurt anyone. She was downright cruel and evil in the way she pointed out other people's personal and physical flaws or " blemishes " in a loud voice to be sure everyone heard her. It was terribly embarrassing to be out with her. I hope none of you lived in Sunnyside, Washington where she carried out her destructive tactics. She may not have commented on tremors, however, because her husband had Parkinsons for a number of years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 << " Are you nervous? Why are you shaking? " This is the second time this month I have had someone I didnt know ask me this. >> I find it soooo hard to understand why people - I assume you are talking about adults - don't recognize a medical condition when they see it. How old are these people? Surely not over 60. I remember knowing people with tremors all my life, and knowing it would not be polite to stare, let alone to comment. (No, not CMTers with tremors, just common people.) My earliest memory in my life was my kindergarten teacher, Miss Freestat. She had white hair, and she had a pronounced tremor in her hands. When we left each day she would take our heads in her hands and try to kiss the tops of our heads. It was quite a daily experience, but even we 4 and 5 year olds knew better than to comment. It was just part of life. We knew when it would be rude to say anything personal. It simply was not done. I can't believe any of my peers would be rude as adults. On the other hand, my mother-in-law was a terror about that. She would say whatever she wanted to about anyone she saw, be it a friend, a stranger or a relative, and she chose not to believe her comments would hurt anyone. She was downright cruel and evil in the way she pointed out other people's personal and physical flaws or " blemishes " in a loud voice to be sure everyone heard her. It was terribly embarrassing to be out with her. I hope none of you lived in Sunnyside, Washington where she carried out her destructive tactics. She may not have commented on tremors, however, because her husband had Parkinsons for a number of years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Hi to all the newcomers!! I am Cathy and I have CMT 1 I am 46 yrs. old and was diagnosed almost 6 yrs. ago after a fall at work. I went through one surgery to repair a herniated disc and and when I loss feeling and had extreme numbness that wouldn't go away plus chronic pain I ended up having EMG done and blood test for the CMT 1. I ended up going through a second surgery after the first one didn't work.....and here I am today. Nobody in my Family had even heard of this disease till I was diagnosed. Now there have been 7 people in my Family including my Grandson Chance who is 7 diagnosed. I also have Family that is from my Fathers first marriage that I just found his January on the internet and come to find out several members have it also including my half brother. I remember my Dad had extremely high arches and use to walk very stiff he also use to get terrible leg cramps at night. He worked 42 yrs. at U.S. steel and hardly ever missed a days work , he passed away 18 yrs. ago never knowing he had a hereditary disease. You have joined a great list...I have learned so much from being on here and getting input from all the Group. I have gotton more out of this list and CMT International than any of the Doctors I have encountered over the past 6 yrs. CATHY CSCluv** http://community.webtv.net/cat926/CATHYSCOOLCATCORNER Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Hi all me again. I thought id tell ya about the comment i got today dince we are talking about the tremors. I was having a conversation with someone I didnt know today, and they made the comment " Are you nervous? Why are you shaking? " This is the second time this month I have had someone I didnt know ask me this. amy http://community.webtv.net/amy913/FromtheHeart Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Hi all me again. I thought id tell ya about the comment i got today dince we are talking about the tremors. I was having a conversation with someone I didnt know today, and they made the comment " Are you nervous? Why are you shaking? " This is the second time this month I have had someone I didnt know ask me this. amy http://community.webtv.net/amy913/FromtheHeart Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Happens to all of us Amy. Once an old vet asked me if I was drunk walking like I do. I dread the day I get pulled over for something and the cops want me to do a sobriety walk. Zaman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 TO Zarman and all the rest; I know the feeling of people thinking you are drunk because of the way you walk. And yes, there is not enough knowledge with the doctors in our country about CMT. I live in a small town in Southeast Mo, and belong to a support group in St. Louis. There are approximately 12 people that attend these meetings regularly. This is a good support for us as we know we are not alone with our symptoms. The fact that the feet are always cold as ice and you just don't know when your balance will not hold you. After we learn to live with the feelings of not being good enough, we can prove that we can accomplish very much in life. Thanks for the chance to share a few of my views. Doris. Re: Digest Number 238 >Happens to all of us Amy. Once an old vet asked me if I was drunk walking >like I do. I dread the day I get pulled over for something and the cops want >me to do a sobriety walk. >Zaman > >------------------------------------------------------------------------ >eGroups eLerts >It's Easy. It's Fun. Best of All, it's Free! >http://click.egroups.com/1/3079/7/_/616793/_/955425715/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 In a message dated 4/10/00 9:02:29 PM Pacific Daylight Time, ne14109now@... writes: << Happens to all of us Amy. Once an old vet asked me if I was drunk walking like I do. I dread the day I get pulled over for something and the cops want me to do a sobriety walk. Zaman >> ************* Zaman, I know exactly what you mean. Before I started using my arm crutches I weaved and wobbled. I imagine I also looked as if I was drunk and I don't drink. Well hardly ever... Jeanie (from Oregon) Moonglow21@... Jeanie421@... come and visit http://www.egroups.com/group/Charcot-Marie-Toothonlinechat " >CMT chat room http://www.egroups.com/group/Charcot-Marie-Toothonlinechat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 In a message dated 4/10/00 9:02:29 PM Pacific Daylight Time, ne14109now@... writes: << Happens to all of us Amy. Once an old vet asked me if I was drunk walking like I do. I dread the day I get pulled over for something and the cops want me to do a sobriety walk. Zaman >> ************* Zaman, I know exactly what you mean. Before I started using my arm crutches I weaved and wobbled. I imagine I also looked as if I was drunk and I don't drink. Well hardly ever... Jeanie (from Oregon) Moonglow21@... Jeanie421@... come and visit http://www.egroups.com/group/Charcot-Marie-Toothonlinechat " >CMT chat room http://www.egroups.com/group/Charcot-Marie-Toothonlinechat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 hi cathy this is brad my dau. we believe has CMT we recently got a test back from NIH in WASHINGTON D.C. and i could not believe they only tested for type x it was neg. she has MEYELIN MISSING OR INCOMPLETE she had a nerve bio. we are now going to get her tested for type 1 i noticed you have type 1 do you have meyelin missing ? also i have learned more on this web than any doc. has told us i believe i also have cmt and all along my grandmothers family line my grandmother lived to be 94 years old so that makes me feel real good also how is chance doing brad cat926@w... wrote: > Hi to all the newcomers!! > I am Cathy and I have CMT 1 I am 46 yrs. old and was diagnosed almost 6 > yrs. ago after a fall at work. I went through one surgery to repair a > herniated disc and and when I loss feeling and had extreme numbness that > wouldn't go away plus chronic pain I ended up having EMG done and blood > test for the CMT 1. I ended up going through a second surgery after the > first one didn't work.....and here I am today. Nobody in my Family had > even heard of this disease till I was diagnosed. Now there have been 7 > people in my Family including my Grandson Chance who is 7 diagnosed. I > also have Family that is from my Fathers first marriage that I just > found his January on the internet and come to find out several members > have it also including my half brother. I remember my Dad had extremely > high arches and use to walk very stiff he also use to get terrible leg > cramps at night. He worked 42 yrs. at U.S. steel and hardly ever missed > a days work , he passed away 18 yrs. ago never knowing he had a > hereditary disease. > You have joined a great list...I have learned so much from being on here > and getting input from all the Group. I have gotton more out of this > list and CMT International than any of the Doctors I have encountered > over the past 6 yrs. > > CATHY > > > > CSCluv** > > > > > > http://community.webtv.net/cat926/CATHYSCOOLCATCORNER Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 hi cathy this is brad my dau. we believe has CMT we recently got a test back from NIH in WASHINGTON D.C. and i could not believe they only tested for type x it was neg. she has MEYELIN MISSING OR INCOMPLETE she had a nerve bio. we are now going to get her tested for type 1 i noticed you have type 1 do you have meyelin missing ? also i have learned more on this web than any doc. has told us i believe i also have cmt and all along my grandmothers family line my grandmother lived to be 94 years old so that makes me feel real good also how is chance doing brad cat926@w... wrote: > Hi to all the newcomers!! > I am Cathy and I have CMT 1 I am 46 yrs. old and was diagnosed almost 6 > yrs. ago after a fall at work. I went through one surgery to repair a > herniated disc and and when I loss feeling and had extreme numbness that > wouldn't go away plus chronic pain I ended up having EMG done and blood > test for the CMT 1. I ended up going through a second surgery after the > first one didn't work.....and here I am today. Nobody in my Family had > even heard of this disease till I was diagnosed. Now there have been 7 > people in my Family including my Grandson Chance who is 7 diagnosed. I > also have Family that is from my Fathers first marriage that I just > found his January on the internet and come to find out several members > have it also including my half brother. I remember my Dad had extremely > high arches and use to walk very stiff he also use to get terrible leg > cramps at night. He worked 42 yrs. at U.S. steel and hardly ever missed > a days work , he passed away 18 yrs. ago never knowing he had a > hereditary disease. > You have joined a great list...I have learned so much from being on here > and getting input from all the Group. I have gotton more out of this > list and CMT International than any of the Doctors I have encountered > over the past 6 yrs. > > CATHY > > > > CSCluv** > > > > > > http://community.webtv.net/cat926/CATHYSCOOLCATCORNER Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2000 Report Share Posted April 14, 2000 hi cathy this is brad my dau. we believe has CMT we recently got a test back from NIH in WASHINGTON D.C. and i could not believe they only tested for type x it was neg. she has MEYELIN MISSING OR INCOMPLETE she had a nerve bio. we are now going to get her tested for type 1 i noticed you have type 1 do you have meyelin missing ? also i have learned more on this web than any doc. has told us i believe i also have cmt and all along my grandmothers family line my grandmother lived to be 94 years old so that makes me feel real good also how is chance doing brad cat926@w... wrote: > Hi to all the newcomers!! > I am Cathy and I have CMT 1 I am 46 yrs. old and was diagnosed almost 6 > yrs. ago after a fall at work. I went through one surgery to repair a > herniated disc and and when I loss feeling and had extreme numbness that > wouldn't go away plus chronic pain I ended up having EMG done and blood > test for the CMT 1. I ended up going through a second surgery after the > first one didn't work.....and here I am today. Nobody in my Family had > even heard of this disease till I was diagnosed. Now there have been 7 > people in my Family including my Grandson Chance who is 7 diagnosed. I > also have Family that is from my Fathers first marriage that I just > found his January on the internet and come to find out several members > have it also including my half brother. I remember my Dad had extremely > high arches and use to walk very stiff he also use to get terrible leg > cramps at night. He worked 42 yrs. at U.S. steel and hardly ever missed > a days work , he passed away 18 yrs. ago never knowing he had a > hereditary disease. > You have joined a great list...I have learned so much from being on here > and getting input from all the Group. I have gotton more out of this > list and CMT International than any of the Doctors I have encountered > over the past 6 yrs. > > CATHY > > > > CSCluv** > > > > > > http://community.webtv.net/cat926/CATHYSCOOLCATCORNER Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2000 Report Share Posted April 17, 2000 Hi , I speak for myself when I say, I believe your e-mail's would be easier to read if they were in lower case letters. Food for thought, E. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2000 Report Share Posted April 17, 2000 ME TOO, I AM 50 YEARS OLD AND JUST FOUND OUT I HAD CMT. I HAD TO TELL MY 80 YEAR OLD MOTHER ABOUT THIS AND SHE THOUGHT I WAS CRAZY, WELL SHE DID THE TEST AND YEP SHE HAD CMT. NOW MY 5 KIDS ARE BEING TESTED, 2 ALREADY HAVE IT NOW THE GRAND KIDS GET DONE, WHAT A DRAG. BUT AT LEAST WE NOW KNOW WHY WE CAN'T WALK RIGHT AND WHY WE FALL SO MUCH. IT DOES GET WORSE WITH AGE, AND WE ALL NEED TO BE STRONG. MONICA Re: Digest Number 238 hi cathy this is brad my dau. we believe has CMT we recently got a test back from NIH in WASHINGTON D.C. and i could not believe they only tested for type x it was neg. she has MEYELIN MISSING OR INCOMPLETE she had a nerve bio. we are now going to get her tested for type 1 i noticed you have type 1 do you have meyelin missing ? also i have learned more on this web than any doc. has told us i believe i also have cmt and all along my grandmothers family line my grandmother lived to be 94 years old so that makes me feel real good also how is chance doing brad cat926@w... wrote: > Hi to all the newcomers!! > I am Cathy and I have CMT 1 I am 46 yrs. old and was diagnosed almost 6 > yrs. ago after a fall at work. I went through one surgery to repair a > herniated disc and and when I loss feeling and had extreme numbness that > wouldn't go away plus chronic pain I ended up having EMG done and blood > test for the CMT 1. I ended up going through a second surgery after the > first one didn't work.....and here I am today. Nobody in my Family had > even heard of this disease till I was diagnosed. Now there have been 7 > people in my Family including my Grandson Chance who is 7 diagnosed. I > also have Family that is from my Fathers first marriage that I just > found his January on the internet and come to find out several members > have it also including my half brother. I remember my Dad had extremely > high arches and use to walk very stiff he also use to get terrible leg > cramps at night. He worked 42 yrs. at U.S. steel and hardly ever missed > a days work , he passed away 18 yrs. ago never knowing he had a > hereditary disease. > You have joined a great list...I have learned so much from being on here > and getting input from all the Group. I have gotton more out of this > list and CMT International than any of the Doctors I have encountered > over the past 6 yrs. > > CATHY > > > > CSCluv** > > > > > > http://community.webtv.net/cat926/CATHYSCOOLCATCORNER ---------------------------------------------------------------------------- ---------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Jackie, Welcome to the group. I hope they can get your medical situation under sontrol, Could you walk in a pool of water, would take the pressure off. I have something called a gazelle, like a ski machine, takes the pressure off the ankles and knees, and can get a good workout. I do not know ifthey have them in Canada though. You are doing really great following the doctors with your meds and exercise. Keep posting to us. You can learn a lot here. Helen Quote Link to comment Share on other sites More sharing options...
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