Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 Becca here I was diagnosed at 13. Although it was most of my years prior they were trying to figure it out. My neurologist told us things such as.... give her a glass of wine.... this was at age 13, to help my tremors also, they said basically they had no idea how it would go... as far far as time and progression one even told us- I would be in a wheelchair by the time I was 18-- I am 33 now, and not in a chair... although I have spent time in one --never permenetly what Dr.'s tell you > > > Hello everyone, can anyone give me any feedback on the first thing your > Dr. told you after saying " Charcot Marie Tooth. " I was diagnosed as a > kid and don't remember much, I am trying to jump-start my memory on this > one. Did anyone's Dr. say " just live with it " or " you may have > limitations " or " you won't be very affected " etc? > Gretchen > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 Becca here I was diagnosed at 13. Although it was most of my years prior they were trying to figure it out. My neurologist told us things such as.... give her a glass of wine.... this was at age 13, to help my tremors also, they said basically they had no idea how it would go... as far far as time and progression one even told us- I would be in a wheelchair by the time I was 18-- I am 33 now, and not in a chair... although I have spent time in one --never permenetly what Dr.'s tell you > > > Hello everyone, can anyone give me any feedback on the first thing your > Dr. told you after saying " Charcot Marie Tooth. " I was diagnosed as a > kid and don't remember much, I am trying to jump-start my memory on this > one. Did anyone's Dr. say " just live with it " or " you may have > limitations " or " you won't be very affected " etc? > Gretchen > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Oh yea, I remember, he said live with it, I was 17 at the time and not quite sure what I was going to have to live with, now 35 I know the beast. what Dr.'s tell you > > >Hello everyone, can anyone give me any feedback on the first thing your >Dr. told you after saying " Charcot Marie Tooth. " I was diagnosed as a >kid and don't remember much, I am trying to jump-start my memory on this >one. Did anyone's Dr. say " just live with it " or " you may have >limitations " or " you won't be very affected " etc? >Gretchen > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Oh yea, I remember, he said live with it, I was 17 at the time and not quite sure what I was going to have to live with, now 35 I know the beast. what Dr.'s tell you > > >Hello everyone, can anyone give me any feedback on the first thing your >Dr. told you after saying " Charcot Marie Tooth. " I was diagnosed as a >kid and don't remember much, I am trying to jump-start my memory on this >one. Did anyone's Dr. say " just live with it " or " you may have >limitations " or " you won't be very affected " etc? >Gretchen > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 My doc told me I can have a pretty normal life with my CMT, and so far, I do. I'm really expecting a cure though because there are many things I want to do that I can't, but generally I think that life gave me more than the average person, so I can forgive it for my CMT. Gretchen Glick wrote: > > > Hello everyone, can anyone give me any feedback on the first thing your > Dr. told you after saying " Charcot Marie Tooth. " I was diagnosed as a > kid and don't remember much, I am trying to jump-start my memory on this > one. Did anyone's Dr. say " just live with it " or " you may have > limitations " or " you won't be very affected " etc? > Gretchen > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 In a message dated 1/12/00 6:44:44 PM Pacific Standard Time, liliwigg@... writes: << Hello everyone, can anyone give me any feedback on the first thing your Dr. told you after saying " Charcot Marie Tooth. " I was diagnosed as a kid and don't remember much, I am trying to jump-start my memory on this one. Did anyone's Dr. say " just live with it " or " you may have limitations " or " you won't be very affected " etc? Gretchen >> My Dr told my parents I could lead an almost normal life or be in a WC by the age of 16. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Hi Becca, here. I'm 54 and have been in a wheelchair for two years. Those were bad years - serious surgery and a stroke. But, stay with me, this post in NOT a downer. Now that I'm well once again, I'm starting to use the walker around the house! This is wonderful. If I get even stronger, or develop more stamina, I might be able to get out by myself and drive my little red come convertible come Spring! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 , this is . My neurologist told me I had a disease called Charcot-Marie-Tooth disease. He said, " If one has to have a neurological disease, this was the best one to have.) I asked about the future, " Would I always walk, was there anything to watch for? " " Surely I said, " I'll never be in a wheelchair? " He said I was making too much out of it. He told me to just go on and live without even thinking about it AND that NO, I would never require a wheelchair! That was in early 1970 and for the last two years I've been in a wheelchair but am regaining strength following a lengthy illness and am working inside my home with the walker! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 , this is . My neurologist told me I had a disease called Charcot-Marie-Tooth disease. He said, " If one has to have a neurological disease, this was the best one to have.) I asked about the future, " Would I always walk, was there anything to watch for? " " Surely I said, " I'll never be in a wheelchair? " He said I was making too much out of it. He told me to just go on and live without even thinking about it AND that NO, I would never require a wheelchair! That was in early 1970 and for the last two years I've been in a wheelchair but am regaining strength following a lengthy illness and am working inside my home with the walker! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 In a message dated 1/14/00 12:03:25 AM Pacific Standard Time, harmac1@... writes: << , this is . My neurologist told me I had a disease called Charcot-Marie-Tooth disease. He said, " If one has to have a neurological disease, this was the best one to have.) I asked about the future, " Would I always walk, was there anything to watch for? " " Surely I said, " I'll never be in a wheelchair? " He said I was making too much out of it. He told me to just go on and live without even thinking about it AND that NO, I would never require a wheelchair! That was in early 1970 and for the last two years I've been in a wheelchair but am regaining strength following a lengthy illness and am working inside my home with the walker! >> They also told my parents it was the best nero problem to have. Umm I still wonder about that one. I think it would be better if it wern't genetic. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 I was diagnosed in Feb of 92 and my neurologist told me it was one of the worst neurological diseases you could have and then I've had those who tell me tough this is what you have and there is nothing you can do about it and now I have a wonderful neurological doctor through MDA and he also has a neurological disease and was written up in the MDA magazine. His name is Dr Mc and he is a wonderful doctor. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2000 Report Share Posted January 15, 2000 My neuros, knew my history with my mom and her late onset, undiagnosed, rapid progression CMT, so they didn't want to worry me one or make any promises. They told me CMT was progressive, but that it was different for each person, even within a family, so I should not assume that my progression would be like my mom's. It may or may not follow the course hers took. They also told me there were no treatments, although if I eventually needed braces to check back. I did think to request the results in writing, for which I'm grateful. A hard copy is much better than trying to rely on memory when one is in an emotional situation. Later, when I asked about help with pain they acknowledged that many CMTers do have pain and they explained that it can be difficult to find the right balance of meds for an individual. Kat in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2000 Report Share Posted January 15, 2000 In a message dated 1/15/00 2:12:27 PM Pacific Standard Time, dcalahan@... writes: << I was diagnosed in Feb of 92 and my neurologist told me it was one of the worst neurological diseases you could have and then I've had those who tell me tough this is what you have and there is nothing you can do about it and now I have a wonderful neurological doctor through MDA and he also has a neurological disease and was written up in the MDA magazine. His name is Dr Mc and he is a wonderful doctor. Donna I know it's not the worst. I think ALS has the rep as being one of the worst. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2000 Report Share Posted January 15, 2000 -My doctors said the same. I think because CMT is classified with the muscular dystrophies and with that we get help and support from MDA. (with the doctors visits, testing, walking aids, wheelchairs/scooters) >From: JACEE17@... > >In a message dated 1/14/00 12:03:25 AM Pacific Standard Time, >harmac1@... writes: > ><< , this is . My neurologist told me I had a disease called > Charcot-Marie-Tooth disease. He said, " If one has to have a > neurological disease, this was the best one to have.) I asked about > the future, " Would I always walk, was there anything to watch for? " " > Surely I said, " I'll never be in a wheelchair? " He said I was making > too much out of it. He told me to just go on and live without even > thinking about it AND that NO, I would never require a wheelchair! That > was in early 1970 and for the last two years I've been in a wheelchair > but am regaining strength following a lengthy illness and am working > inside my home with the walker! > >> >They also told my parents it was the best nero problem to have. >Umm I still wonder about that one. I think it would be better if it wern't >genetic. >jenny > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2000 Report Share Posted January 16, 2000 Hey everyone- I knowit is hard to find a good doctor who knows anything about CMT but when you do- you feel so much better. I also have scolosis and a rod in my back as does my sister so it is sometimes even harder top find someone. In 1992- I went to a great dr. Dr. Brever- he is in NJ and is wonderful- knows about CMT- personably, answers all your silly questions and always has time for his patients. When I went to him, he sent me to a super physical therapist- Matt, he knew about CMT and provided me with a great exercise program- 20-30min on the NOrdic Track, a a lot of stretching exercises- he was wonderful- he even called to make sur I was doing it- then as I got stronger- he allowed me to atlernate with 20-30minutes of biking- I did this everyday- lost weight had more enegry and really felt better. I have since slacked off- grad school and work kind of got in the way but Iam in the process of getting myself back into the routine- We also use a doctor at the MDA clinic in NJ- Dr. Meyers- the whole family goes to him- he is equally as wonderful. Now I in the processof finding a good OB/GYN who knows a little about scolosis and about CMT- any one know of any in NJ/NY? I just want the dr to have some kind of knowledge or at least have heard of it. Thanks and havea great day. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2000 Report Share Posted January 16, 2000 In a message dated 1/16/00 5:04:46 AM Pacific Standard Time, JAA118@... writes: << Now I in the processof finding a good OB/GYN who knows a little about scolosis and about CMT- any one know of any in NJ/NY? I just want the dr to have some kind of knowledge or at least have heard of it. Thanks and havea great day. Jill >> Good luck Jill, Haha jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 My doctor said the same thing also, but sometimes I wish that I could have a " normal " disease--something that people have heard of like MS. It is so hard to try to explain to people that just because I look normal I do not feel normal. I am 27 and occasionally have to walk with a cane and I have to wear wrist splints all the time at work. When people see me they make this huge deal out of it because they think I was in an accident. Complete strangers come up and ask me what happenned. When I explain the situation to them they seem rather disappointed. Lori ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 My doctor said the same thing also, but sometimes I wish that I could have a " normal " disease--something that people have heard of like MS. It is so hard to try to explain to people that just because I look normal I do not feel normal. I am 27 and occasionally have to walk with a cane and I have to wear wrist splints all the time at work. When people see me they make this huge deal out of it because they think I was in an accident. Complete strangers come up and ask me what happenned. When I explain the situation to them they seem rather disappointed. Lori ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 My doctor said the same thing also, but sometimes I wish that I could have a " normal " disease--something that people have heard of like MS. It is so hard to try to explain to people that just because I look normal I do not feel normal. I am 27 and occasionally have to walk with a cane and I have to wear wrist splints all the time at work. When people see me they make this huge deal out of it because they think I was in an accident. Complete strangers come up and ask me what happenned. When I explain the situation to them they seem rather disappointed. Lori ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 In a message dated 1/18/00 1:29:18 PM Pacific Standard Time, lb_reed@... writes: << My doctor said the same thing also, but sometimes I wish that I could have a " normal " disease--something that people have heard of like MS. It is so hard to try to explain to people that just because I look normal I do not feel normal. I am 27 and occasionally have to walk with a cane and I have to wear wrist splints all the time at work. When people see me they make this huge deal out of it because they think I was in an accident. Complete strangers come up and ask me what happenned. When I explain the situation to them they seem rather disappointed. Lori >> I have had the " questions " a little more then i would like in my 32 years on earth. I had one lady freak out wanting to know why my feet were so swollen. I finally told her it was a birth defect! Quote Link to comment Share on other sites More sharing options...
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