Guest guest Posted May 5, 2001 Report Share Posted May 5, 2001 In a message dated 5/5/2001 1:19:04 PM Pacific Daylight Time, bracamontes@... writes: > The main thing that I would like to know is how you go about getting > diagnosed? > Thanks Again, > > > > you need to see a good doctor. A neurologist that has education in genetic disorders and also CMT. Take the name number and addresses of your Fathers other doctors. That way they can have the other tests faxed to them. Some doctors can take one look and identify CMT. The blood test is not always necessary. I am 33 I have had CMT since 4 and I have never had a blood test to tell me what type. Where do you live? Maybe we can help you find a doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 ----- Original Message ----- From: <Mommy2Adam@...> < > Sent: Saturday, May 05, 2001 4:03 PM Subject: Re: [] 'probable CMT' > In a message dated 5/5/2001 1:19:04 PM Pacific Daylight Time, > bracamontes@... writes: > > > > The main thing that I would like to know is how you go about getting > > diagnosed? > > Thanks Again, > > > > > > > > > > you need to see a good doctor. A neurologist that has education in > genetic disorders and also CMT. Take the name number and addresses of your > Fathers other doctors. That way they can have the other tests faxed to them. > Some doctors can take one look and identify CMT. The blood test is not always > necessary. I am 33 I have had CMT since 4 and I have never had a blood test > to tell me what type. > Where do you live? Maybe we can help you find a doctor. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 In a message dated 5/5/2001 11:52:23 PM Central Daylight Time, Mommy2Adam@... writes: > The main thing that I would like to know is how you go about getting > > diagnosed? > Call your nearest MDA office and make an appointment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Hi , Is the Diabetes Type 1 or Type 2? ----- Original Message ----- From: Mr. Bracamontes <bracamontes@...> < > Sent: Saturday, May 05, 2001 1:10 PM Subject: [] 'probable CMT' > Hi, > > My name is and I am searching for some answers. I began searching the internet to put a name to a disease which my father has. Since beginning to research this disease, I have begun to suspect that I share it. I have voiced my concerns to my Doctor, but we have been concentrating on my Fibromyalgia, which I have had for about 11 years. My father has had nerve biopsies of his leg and the conclusion is that he has " some form " of demyelinating disease, but they have not given it a name. When I copied some information off the internet about CMT and gave it to him to read, he said that it was like somebody had crawled inside his head and knew exactly how he was feeling. While I have Fibromyalgia, he has Rheumatoid Arthritis, and we both have had carpal tunnel (he has had one release, I have had one on each hand as well as an ulnar nerve release). > I have read that this disease can be determined by genetic blood testing, but I am dubious about convincing my doctor to perform this as I am a retired military dependant and if the test is really expensive or difficult, it's like lobbying congress to get approval. Since CMT is hereditary, I would really like to know so that my Father will finally be able to put a name to his disease and can maybe come to grips with it. He has lost most of the feeling in his legs below the knees and is therefore mostly wheelchair bound as he has a very poor sense of balance. He is also diabetic, as am I. I have two sisters who are also diabetic and have begun having trouble with the feeling in their hands, and my elder sister has a big problem with hammer toes. It all really sounds like CMT to me and I wouldn't be honest if I didn't admit to being scared. I still have two kids in middle school and one in college. I understand that there is no cure for CMT and that the severity of it varies greatly in families sometimes, but I need to know if there is any therapy that I can take to help or if there are some medications that I take for other health problems that are bad for me if I have CMT. I have read that Prozac doesn't mix well with Dextromethorphan or Pseudoephedrine. I work in a very high stress job that I am unable to quit at present and dealing with chronic pain is a real downer. The Prozac has really really helped and I would hate to quit taking it. Dosen't do anything for the pain, but really helps me to cope with it. > Thank You so much for providing a site for me to get this off of my chest. I know this is a really long letter, but if any of you get to the end of it and have any ideas, information or suggestions for me I would be so grateful to hear from you. Actually, it's just nice to know that there are other functioning people out there who are dealing with the same thing. The main thing that I would like to know is how you go about getting diagnosed? > Thanks Again, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Hi Bill, Diabetes is Type 2 but was diagnosed at 25, put on insulin at 29 and told was type 1, then the army finally decided I was type 2. Must bow to their decision as oral meds have, until recently, been working very well. I am now 44. ----- Original Message ----- From: Bill , Digitec Security <BILL@...> < > Sent: Monday, May 07, 2001 1:35 PM Subject: Re: [] 'probable CMT' > Hi , > Is the Diabetes Type 1 or Type 2? > ----- Original Message ----- > From: Mr. Bracamontes <bracamontes@...> > < > > Sent: Saturday, May 05, 2001 1:10 PM > Subject: [] 'probable CMT' > > > > Hi, > > > > My name is and I am searching for some answers. I began searching > the internet to put a name to a disease which my father has. Since > beginning to research this disease, I have begun to suspect that I share it. > I have voiced my concerns to my Doctor, but we have been concentrating on my > Fibromyalgia, which I have had for about 11 years. My father has had nerve > biopsies of his leg and the conclusion is that he has " some form " of > demyelinating disease, but they have not given it a name. When I copied > some information off the internet about CMT and gave it to him to read, he > said that it was like somebody had crawled inside his head and knew exactly > how he was feeling. While I have Fibromyalgia, he has Rheumatoid Arthritis, > and we both have had carpal tunnel (he has had one release, I have had one > on each hand as well as an ulnar nerve release). > > I have read that this disease can be determined by genetic blood testing, > but I am dubious about convincing my doctor to perform this as I am a > retired military dependant and if the test is really expensive or difficult, > it's like lobbying congress to get approval. Since CMT is hereditary, I > would really like to know so that my Father will finally be able to put a > name to his disease and can maybe come to grips with it. He has lost most > of the feeling in his legs below the knees and is therefore mostly > wheelchair bound as he has a very poor sense of balance. He is also > diabetic, as am I. I have two sisters who are also diabetic and have begun > having trouble with the feeling in their hands, and my elder sister has a > big problem with hammer toes. It all really sounds like CMT to me and I > wouldn't be honest if I didn't admit to being scared. I still have two kids > in middle school and one in college. I understand that there is no cure for > CMT and that the severity of it varies greatly in families sometimes, but I > need to know if there is any therapy that I can take to help or if there are > some medications that I take for other health problems that are bad for me > if I have CMT. I have read that Prozac doesn't mix well with > Dextromethorphan or Pseudoephedrine. I work in a very high stress job that > I am unable to quit at present and dealing with chronic pain is a real > downer. The Prozac has really really helped and I would hate to quit taking > it. Dosen't do anything for the pain, but really helps me to cope with it. > > Thank You so much for providing a site for me to get this off of my chest. > I know this is a really long letter, but if any of you get to the end of it > and have any ideas, information or suggestions for me I would be so grateful > to hear from you. Actually, it's just nice to know that there are other > functioning people out there who are dealing with the same thing. The main > thing that I would like to know is how you go about getting diagnosed? > > Thanks Again, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Very interesting case . The internet is a wonderful search tool although not everything we find will work for us. Good luck. Regards, BC ----- Original Message ----- From: Mr. Bracamontes <bracamontes@...> < > Sent: Monday, May 07, 2001 5:24 PM Subject: Re: [] 'probable CMT' > Hi Bill, > Diabetes is Type 2 but was diagnosed at 25, put on insulin at 29 and told > was type 1, then the army finally decided I was type 2. Must bow to their > decision as oral meds have, until recently, been working very well. I am > now 44. > ----- Original Message ----- > From: Bill , Digitec Security <BILL@...> > < > > Sent: Monday, May 07, 2001 1:35 PM > Subject: Re: [] 'probable CMT' > > > > Hi , > > Is the Diabetes Type 1 or Type 2? > > ----- Original Message ----- > > From: Mr. Bracamontes <bracamontes@...> > > < > > > Sent: Saturday, May 05, 2001 1:10 PM > > Subject: [] 'probable CMT' > > > > > > > Hi, > > > > > > My name is and I am searching for some answers. I began searching > > the internet to put a name to a disease which my father has. Since > > beginning to research this disease, I have begun to suspect that I share > it. > > I have voiced my concerns to my Doctor, but we have been concentrating on > my > > Fibromyalgia, which I have had for about 11 years. My father has had > nerve > > biopsies of his leg and the conclusion is that he has " some form " of > > demyelinating disease, but they have not given it a name. When I copied > > some information off the internet about CMT and gave it to him to read, he > > said that it was like somebody had crawled inside his head and knew > exactly > > how he was feeling. While I have Fibromyalgia, he has Rheumatoid > Arthritis, > > and we both have had carpal tunnel (he has had one release, I have had one > > on each hand as well as an ulnar nerve release). > > > I have read that this disease can be determined by genetic blood > testing, > > but I am dubious about convincing my doctor to perform this as I am a > > retired military dependant and if the test is really expensive or > difficult, > > it's like lobbying congress to get approval. Since CMT is hereditary, I > > would really like to know so that my Father will finally be able to put a > > name to his disease and can maybe come to grips with it. He has lost most > > of the feeling in his legs below the knees and is therefore mostly > > wheelchair bound as he has a very poor sense of balance. He is also > > diabetic, as am I. I have two sisters who are also diabetic and have > begun > > having trouble with the feeling in their hands, and my elder sister has a > > big problem with hammer toes. It all really sounds like CMT to me and I > > wouldn't be honest if I didn't admit to being scared. I still have two > kids > > in middle school and one in college. I understand that there is no cure > for > > CMT and that the severity of it varies greatly in families sometimes, but > I > > need to know if there is any therapy that I can take to help or if there > are > > some medications that I take for other health problems that are bad for me > > if I have CMT. I have read that Prozac doesn't mix well with > > Dextromethorphan or Pseudoephedrine. I work in a very high stress job > that > > I am unable to quit at present and dealing with chronic pain is a real > > downer. The Prozac has really really helped and I would hate to quit > taking > > it. Dosen't do anything for the pain, but really helps me to cope with > it. > > > Thank You so much for providing a site for me to get this off of my > chest. > > I know this is a really long letter, but if any of you get to the end of > it > > and have any ideas, information or suggestions for me I would be so > grateful > > to hear from you. Actually, it's just nice to know that there are other > > functioning people out there who are dealing with the same thing. The > main > > thing that I would like to know is how you go about getting diagnosed? > > > Thanks Again, > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Hi , I have just read your mail I know exactly how you feel, I went through a similar scary experience while trying to find the answers to my condition. I was only properly diagnosed two years ago and this site has helped me tremendously with their positive and witty manner and especially their words of wisdom. I had my diagnoses confirmed by a neurologist and I am now under his care. I live in Scotland but I believe there is a list of neurologists who specialise in CMT within your country (assuming that is America). There is a good life to be had with CMT it is putting it all into perspective that helps you get through. Take care Palombo > Hi, > > My name is and I am searching for some answers. I began searching the internet to put a name to a disease which my father has. Since beginning to research this disease, I have begun to suspect that I share it. I have voiced my concerns to my Doctor, but we have been concentrating on my Fibromyalgia, which I have had for about 11 years. My father has had nerve biopsies of his leg and the conclusion is that he has " some form " of demyelinating disease, but they have not given it a name. When I copied some information off the internet about CMT and gave it to him to read, he said that it was like somebody had crawled inside his head and knew exactly how he was feeling. While I have Fibromyalgia, he has Rheumatoid Arthritis, and we both have had carpal tunnel (he has had one release, I have had one on each hand as well as an ulnar nerve release). > I have read that this disease can be determined by genetic blood testing, but I am dubious about convincing my doctor to perform this as I am a retired military dependant and if the test is really expensive or difficult, it's like lobbying congress to get approval. Since CMT is hereditary, I would really like to know so that my Father will finally be able to put a name to his disease and can maybe come to grips with it. He has lost most of the feeling in his legs below the knees and is therefore mostly wheelchair bound as he has a very poor sense of balance. He is also diabetic, as am I. I have two sisters who are also diabetic and have begun having trouble with the feeling in their hands, and my elder sister has a big problem with hammer toes. It all really sounds like CMT to me and I wouldn't be honest if I didn't admit to being scared. I still have two kids in middle school and one in college. I understand that there is no cure for CMT and that the severity of it varies greatly in families sometimes, but I need to know if there is any therapy that I can take to help or if there are some medications that I take for other health problems that are bad for me if I have CMT. I have read that Prozac doesn't mix well with Dextromethorphan or Pseudoephedrine. I work in a very high stress job that I am unable to quit at present and dealing with chronic pain is a real downer. The Prozac has really really helped and I would hate to quit taking it. Dosen't do anything for the pain, but really helps me to cope with it. > Thank You so much for providing a site for me to get this off of my chest. I know this is a really long letter, but if any of you get to the end of it and have any ideas, information or suggestions for me I would be so grateful to hear from you. Actually, it's just nice to know that there are other functioning people out there who are dealing with the same thing. The main thing that I would like to know is how you go about getting diagnosed? > Thanks Again, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Thanks Bill. Saw the Doc today, has agreed to send me for EMG/Nerve Conduction on the legs. Have already had those on hands/arms with subsequent CTR and Ulnar Nerve Release. But it's at least a beginning. Thanks for caring! MB ----- Original Message ----- From: Bill , Digitec Security <BILL@...> < > Sent: Tuesday, May 08, 2001 9:25 AM Subject: Re: [] 'probable CMT' > Very interesting case . The internet is a wonderful search tool although > not everything we find will work for us. Good luck. > Regards, > BC > ----- Original Message ----- > From: Mr. Bracamontes <bracamontes@...> > < > > Sent: Monday, May 07, 2001 5:24 PM > Subject: Re: [] 'probable CMT' > > > > Hi Bill, > > Diabetes is Type 2 but was diagnosed at 25, put on insulin at 29 and told > > was type 1, then the army finally decided I was type 2. Must bow to their > > decision as oral meds have, until recently, been working very well. I am > > now 44. > > ----- Original Message ----- > > From: Bill , Digitec Security <BILL@...> > > < > > > Sent: Monday, May 07, 2001 1:35 PM > > Subject: Re: [] 'probable CMT' > > > > > > > Hi , > > > Is the Diabetes Type 1 or Type 2? > > > ----- Original Message ----- > > > From: Mr. Bracamontes <bracamontes@...> > > > < > > > > Sent: Saturday, May 05, 2001 1:10 PM > > > Subject: [] 'probable CMT' > > > > > > > > > > Hi, > > > > > > > > My name is and I am searching for some answers. I began > searching > > > the internet to put a name to a disease which my father has. Since > > > beginning to research this disease, I have begun to suspect that I share > > it. > > > I have voiced my concerns to my Doctor, but we have been concentrating > on > > my > > > Fibromyalgia, which I have had for about 11 years. My father has had > > nerve > > > biopsies of his leg and the conclusion is that he has " some form " of > > > demyelinating disease, but they have not given it a name. When I copied > > > some information off the internet about CMT and gave it to him to read, > he > > > said that it was like somebody had crawled inside his head and knew > > exactly > > > how he was feeling. While I have Fibromyalgia, he has Rheumatoid > > Arthritis, > > > and we both have had carpal tunnel (he has had one release, I have had > one > > > on each hand as well as an ulnar nerve release). > > > > I have read that this disease can be determined by genetic blood > > testing, > > > but I am dubious about convincing my doctor to perform this as I am a > > > retired military dependant and if the test is really expensive or > > difficult, > > > it's like lobbying congress to get approval. Since CMT is hereditary, I > > > would really like to know so that my Father will finally be able to put > a > > > name to his disease and can maybe come to grips with it. He has lost > most > > > of the feeling in his legs below the knees and is therefore mostly > > > wheelchair bound as he has a very poor sense of balance. He is also > > > diabetic, as am I. I have two sisters who are also diabetic and have > > begun > > > having trouble with the feeling in their hands, and my elder sister has > a > > > big problem with hammer toes. It all really sounds like CMT to me and I > > > wouldn't be honest if I didn't admit to being scared. I still have two > > kids > > > in middle school and one in college. I understand that there is no cure > > for > > > CMT and that the severity of it varies greatly in families sometimes, > but > > I > > > need to know if there is any therapy that I can take to help or if there > > are > > > some medications that I take for other health problems that are bad for > me > > > if I have CMT. I have read that Prozac doesn't mix well with > > > Dextromethorphan or Pseudoephedrine. I work in a very high stress job > > that > > > I am unable to quit at present and dealing with chronic pain is a real > > > downer. The Prozac has really really helped and I would hate to quit > > taking > > > it. Dosen't do anything for the pain, but really helps me to cope with > > it. > > > > Thank You so much for providing a site for me to get this off of my > > chest. > > > I know this is a really long letter, but if any of you get to the end of > > it > > > and have any ideas, information or suggestions for me I would be so > > grateful > > > to hear from you. Actually, it's just nice to know that there are other > > > functioning people out there who are dealing with the same thing. The > > main > > > thing that I would like to know is how you go about getting diagnosed? > > > > Thanks Again, > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Howdy , Lovely to hear from Scotland! Yes I do live in the U.S. (Texas--you probably guessed that already). Went to the Doc today and he agreed to send me for EMG/Nerve Conduction on the legs. At least it's a start, was afraid I wouldn't be able to convince him to do that much. I agree with you about this site. I moved away from my hometown for about 20 years after I married my Army Guy, and when we moved back about 5 years ago, the first thing that I noticed was how rude the people had become, there's absolutely NO such thing as common courtesy here. No one will go out of their way to help anybody else. SOOOOO, finding a group of lovely, caring people out there like yall is a real boon to my emotional state. You all make me feel like there really IS still hope for mankind! Just reading your letters to each other is fun. Thank you , and thanks to all. Praying for a great day for all! B. ----- Original Message ----- From: Palombo <lindapalombo@...> < > Sent: Tuesday, May 08, 2001 2:37 PM Subject: [] Re: 'probable CMT' > Hi , > > I have just read your mail I know exactly how you feel, I went > through a similar scary experience while trying to find the > answers to my condition. I was only properly diagnosed two > years ago and this site has helped me tremendously with their > positive and witty manner and especially their words of wisdom. I > had my diagnoses confirmed by a neurologist and I am now > under his care. I live in Scotland but I believe there is a list of > neurologists who specialise in CMT within your country > (assuming that is America). There is a good life to be had with > CMT it is putting it all into perspective that helps you get through. > > > Take care > Palombo > > > > > Hi, > > > > My name is and I am searching for some answers. I > began searching the internet to put a name to a disease which > my father has. Since beginning to research this disease, I have > begun to suspect that I share it. I have voiced my concerns to my > Doctor, but we have been concentrating on my Fibromyalgia, > which I have had for about 11 years. My father has had nerve > biopsies of his leg and the conclusion is that he has " some > form " of demyelinating disease, but they have not given it a > name. When I copied some information off the internet about > CMT and gave it to him to read, he said that it was like somebody > had crawled inside his head and knew exactly how he was > feeling. While I have Fibromyalgia, he has Rheumatoid Arthritis, > and we both have had carpal tunnel (he has had one release, I > have had one on each hand as well as an ulnar nerve release). > > I have read that this disease can be determined by genetic > blood testing, but I am dubious about convincing my doctor to > perform this as I am a retired military dependant and if the test is > really expensive or difficult, it's like lobbying congress to get > approval. Since CMT is hereditary, I would really like to know so > that my Father will finally be able to put a name to his disease > and can maybe come to grips with it. He has lost most of the > feeling in his legs below the knees and is therefore mostly > wheelchair bound as he has a very poor sense of balance. He > is also diabetic, as am I. I have two sisters who are also > diabetic and have begun having trouble with the feeling in their > hands, and my elder sister has a big problem with hammer > toes. It all really sounds like CMT to me and I wouldn't be honest > if I didn't admit to being scared. I still have two kids in middle > school and one in college. I understand that there is no cure for > CMT and that the severity of it varies greatly in families > sometimes, but I need to know if there is any therapy that I can > take to help or if there are some medications that I take for other > health problems that are bad for me if I have CMT. I have read > that Prozac doesn't mix well with Dextromethorphan or > Pseudoephedrine. I work in a very high stress job that I am > unable to quit at present and dealing with chronic pain is a real > downer. The Prozac has really really helped and I would hate to > quit taking it. Dosen't do anything for the pain, but really helps > me to cope with it. > > Thank You so much for providing a site for me to get this off of > my chest. I know this is a really long letter, but if any of you get to > the end of it and have any ideas, information or suggestions for > me I would be so grateful to hear from you. Actually, it's just nice > to know that there are other functioning people out there who are > dealing with the same thing. The main thing that I would like to > know is how you go about getting diagnosed? > > Thanks Again, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Cry tough! ----- Original Message ----- From: Mr. Bracamontes <bracamontes@...> < > Sent: Tuesday, May 08, 2001 2:01 PM Subject: Re: [] 'probable CMT' > Thanks Bill. Saw the Doc today, has agreed to send me for EMG/Nerve > Conduction on the legs. Have already had those on hands/arms with > subsequent CTR and Ulnar Nerve Release. But it's at least a beginning. > Thanks for caring! MB > ----- Original Message ----- > From: Bill , Digitec Security <BILL@...> > < > > Sent: Tuesday, May 08, 2001 9:25 AM > Subject: Re: [] 'probable CMT' > > > > Very interesting case . The internet is a wonderful search tool > although > > not everything we find will work for us. Good luck. > > Regards, > > BC > > ----- Original Message ----- > > From: Mr. Bracamontes <bracamontes@...> > > < > > > Sent: Monday, May 07, 2001 5:24 PM > > Subject: Re: [] 'probable CMT' > > > > > > > Hi Bill, > > > Diabetes is Type 2 but was diagnosed at 25, put on insulin at 29 and > told > > > was type 1, then the army finally decided I was type 2. Must bow to > their > > > decision as oral meds have, until recently, been working very well. I > am > > > now 44. > > > ----- Original Message ----- > > > From: Bill , Digitec Security <BILL@...> > > > < > > > > Sent: Monday, May 07, 2001 1:35 PM > > > Subject: Re: [] 'probable CMT' > > > > > > > > > > Hi , > > > > Is the Diabetes Type 1 or Type 2? > > > > ----- Original Message ----- > > > > From: Mr. Bracamontes <bracamontes@...> > > > > < > > > > > Sent: Saturday, May 05, 2001 1:10 PM > > > > Subject: [] 'probable CMT' > > > > > > > > > > > > > Hi, > > > > > > > > > > My name is and I am searching for some answers. I began > > searching > > > > the internet to put a name to a disease which my father has. Since > > > > beginning to research this disease, I have begun to suspect that I > share > > > it. > > > > I have voiced my concerns to my Doctor, but we have been concentrating > > on > > > my > > > > Fibromyalgia, which I have had for about 11 years. My father has had > > > nerve > > > > biopsies of his leg and the conclusion is that he has " some form " of > > > > demyelinating disease, but they have not given it a name. When I > copied > > > > some information off the internet about CMT and gave it to him to > read, > > he > > > > said that it was like somebody had crawled inside his head and knew > > > exactly > > > > how he was feeling. While I have Fibromyalgia, he has Rheumatoid > > > Arthritis, > > > > and we both have had carpal tunnel (he has had one release, I have had > > one > > > > on each hand as well as an ulnar nerve release). > > > > > I have read that this disease can be determined by genetic blood > > > testing, > > > > but I am dubious about convincing my doctor to perform this as I am a > > > > retired military dependant and if the test is really expensive or > > > difficult, > > > > it's like lobbying congress to get approval. Since CMT is hereditary, > I > > > > would really like to know so that my Father will finally be able to > put > > a > > > > name to his disease and can maybe come to grips with it. He has lost > > most > > > > of the feeling in his legs below the knees and is therefore mostly > > > > wheelchair bound as he has a very poor sense of balance. He is also > > > > diabetic, as am I. I have two sisters who are also diabetic and have > > > begun > > > > having trouble with the feeling in their hands, and my elder sister > has > > a > > > > big problem with hammer toes. It all really sounds like CMT to me and > I > > > > wouldn't be honest if I didn't admit to being scared. I still have > two > > > kids > > > > in middle school and one in college. I understand that there is no > cure > > > for > > > > CMT and that the severity of it varies greatly in families sometimes, > > but > > > I > > > > need to know if there is any therapy that I can take to help or if > there > > > are > > > > some medications that I take for other health problems that are bad > for > > me > > > > if I have CMT. I have read that Prozac doesn't mix well with > > > > Dextromethorphan or Pseudoephedrine. I work in a very high stress job > > > that > > > > I am unable to quit at present and dealing with chronic pain is a real > > > > downer. The Prozac has really really helped and I would hate to quit > > > taking > > > > it. Dosen't do anything for the pain, but really helps me to cope > with > > > it. > > > > > Thank You so much for providing a site for me to get this off of my > > > chest. > > > > I know this is a really long letter, but if any of you get to the end > of > > > it > > > > and have any ideas, information or suggestions for me I would be so > > > grateful > > > > to hear from you. Actually, it's just nice to know that there are > other > > > > functioning people out there who are dealing with the same thing. The > > > main > > > > thing that I would like to know is how you go about getting diagnosed? > > > > > Thanks Again, > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2001 Report Share Posted May 9, 2001 Got my box of tissues! Praying for lovely birthday for your Mom! ----- Original Message ----- From: Bill , Digitec Security <BILL@...> < > Sent: Tuesday, May 08, 2001 5:54 PM Subject: Re: [] 'probable CMT' > Cry tough! > ----- Original Message ----- > From: Mr. Bracamontes <bracamontes@...> > < > > Sent: Tuesday, May 08, 2001 2:01 PM > Subject: Re: [] 'probable CMT' > > > > Thanks Bill. Saw the Doc today, has agreed to send me for EMG/Nerve > > Conduction on the legs. Have already had those on hands/arms with > > subsequent CTR and Ulnar Nerve Release. But it's at least a beginning. > > Thanks for caring! MB > > ----- Original Message ----- > > From: Bill , Digitec Security <BILL@...> > > < > > > Sent: Tuesday, May 08, 2001 9:25 AM > > Subject: Re: [] 'probable CMT' > > > > > > > Very interesting case . The internet is a wonderful search tool > > although > > > not everything we find will work for us. Good luck. > > > Regards, > > > BC > > > ----- Original Message ----- > > > From: Mr. Bracamontes <bracamontes@...> > > > < > > > > Sent: Monday, May 07, 2001 5:24 PM > > > Subject: Re: [] 'probable CMT' > > > > > > > > > > Hi Bill, > > > > Diabetes is Type 2 but was diagnosed at 25, put on insulin at 29 and > > told > > > > was type 1, then the army finally decided I was type 2. Must bow to > > their > > > > decision as oral meds have, until recently, been working very well. I > > am > > > > now 44. > > > > ----- Original Message ----- > > > > From: Bill , Digitec Security <BILL@...> > > > > < > > > > > Sent: Monday, May 07, 2001 1:35 PM > > > > Subject: Re: [] 'probable CMT' > > > > > > > > > > > > > Hi , > > > > > Is the Diabetes Type 1 or Type 2? > > > > > ----- Original Message ----- > > > > > From: Mr. Bracamontes <bracamontes@...> > > > > > < > > > > > > Sent: Saturday, May 05, 2001 1:10 PM > > > > > Subject: [] 'probable CMT' > > > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > My name is and I am searching for some answers. I began > > > searching > > > > > the internet to put a name to a disease which my father has. Since > > > > > beginning to research this disease, I have begun to suspect that I > > share > > > > it. > > > > > I have voiced my concerns to my Doctor, but we have been > concentrating > > > on > > > > my > > > > > Fibromyalgia, which I have had for about 11 years. My father has > had > > > > nerve > > > > > biopsies of his leg and the conclusion is that he has " some form " of > > > > > demyelinating disease, but they have not given it a name. When I > > copied > > > > > some information off the internet about CMT and gave it to him to > > read, > > > he > > > > > said that it was like somebody had crawled inside his head and knew > > > > exactly > > > > > how he was feeling. While I have Fibromyalgia, he has Rheumatoid > > > > Arthritis, > > > > > and we both have had carpal tunnel (he has had one release, I have > had > > > one > > > > > on each hand as well as an ulnar nerve release). > > > > > > I have read that this disease can be determined by genetic blood > > > > testing, > > > > > but I am dubious about convincing my doctor to perform this as I am > a > > > > > retired military dependant and if the test is really expensive or > > > > difficult, > > > > > it's like lobbying congress to get approval. Since CMT is > hereditary, > > I > > > > > would really like to know so that my Father will finally be able to > > put > > > a > > > > > name to his disease and can maybe come to grips with it. He has > lost > > > most > > > > > of the feeling in his legs below the knees and is therefore mostly > > > > > wheelchair bound as he has a very poor sense of balance. He is also > > > > > diabetic, as am I. I have two sisters who are also diabetic and > have > > > > begun > > > > > having trouble with the feeling in their hands, and my elder sister > > has > > > a > > > > > big problem with hammer toes. It all really sounds like CMT to me > and > > I > > > > > wouldn't be honest if I didn't admit to being scared. I still have > > two > > > > kids > > > > > in middle school and one in college. I understand that there is no > > cure > > > > for > > > > > CMT and that the severity of it varies greatly in families > sometimes, > > > but > > > > I > > > > > need to know if there is any therapy that I can take to help or if > > there > > > > are > > > > > some medications that I take for other health problems that are bad > > for > > > me > > > > > if I have CMT. I have read that Prozac doesn't mix well with > > > > > Dextromethorphan or Pseudoephedrine. I work in a very high stress > job > > > > that > > > > > I am unable to quit at present and dealing with chronic pain is a > real > > > > > downer. The Prozac has really really helped and I would hate to > quit > > > > taking > > > > > it. Dosen't do anything for the pain, but really helps me to cope > > with > > > > it. > > > > > > Thank You so much for providing a site for me to get this off of > my > > > > chest. > > > > > I know this is a really long letter, but if any of you get to the > end > > of > > > > it > > > > > and have any ideas, information or suggestions for me I would be so > > > > grateful > > > > > to hear from you. Actually, it's just nice to know that there are > > other > > > > > functioning people out there who are dealing with the same thing. > The > > > > main > > > > > thing that I would like to know is how you go about getting > diagnosed? > > > > > > Thanks Again, > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2001 Report Share Posted May 9, 2001 Thanks so much. ----- Original Message ----- From: Mr. Bracamontes <bracamontes@...> < > Sent: Tuesday, May 08, 2001 6:44 PM Subject: Re: [] 'probable CMT' > Got my box of tissues! Praying for lovely birthday for your Mom! > > ----- Original Message ----- > From: Bill , Digitec Security <BILL@...> > < > > Sent: Tuesday, May 08, 2001 5:54 PM > Subject: Re: [] 'probable CMT' > > > > Cry tough! > > ----- Original Message ----- > > From: Mr. Bracamontes <bracamontes@...> > > < > > > Sent: Tuesday, May 08, 2001 2:01 PM > > Subject: Re: [] 'probable CMT' > > > > > > > Thanks Bill. Saw the Doc today, has agreed to send me for EMG/Nerve > > > Conduction on the legs. Have already had those on hands/arms with > > > subsequent CTR and Ulnar Nerve Release. But it's at least a beginning. > > > Thanks for caring! MB > > > ----- Original Message ----- > > > From: Bill , Digitec Security <BILL@...> > > > < > > > > Sent: Tuesday, May 08, 2001 9:25 AM > > > Subject: Re: [] 'probable CMT' > > > > > > > > > > Very interesting case . The internet is a wonderful search tool > > > although > > > > not everything we find will work for us. Good luck. > > > > Regards, > > > > BC > > > > ----- Original Message ----- > > > > From: Mr. Bracamontes <bracamontes@...> > > > > < > > > > > Sent: Monday, May 07, 2001 5:24 PM > > > > Subject: Re: [] 'probable CMT' > > > > > > > > > > > > > Hi Bill, > > > > > Diabetes is Type 2 but was diagnosed at 25, put on insulin at 29 and > > > told > > > > > was type 1, then the army finally decided I was type 2. Must bow to > > > their > > > > > decision as oral meds have, until recently, been working very well. > I > > > am > > > > > now 44. > > > > > ----- Original Message ----- > > > > > From: Bill , Digitec Security <BILL@...> > > > > > < > > > > > > Sent: Monday, May 07, 2001 1:35 PM > > > > > Subject: Re: [] 'probable CMT' > > > > > > > > > > > > > > > > Hi , > > > > > > Is the Diabetes Type 1 or Type 2? > > > > > > ----- Original Message ----- > > > > > > From: Mr. Bracamontes <bracamontes@...> > > > > > > < > > > > > > > Sent: Saturday, May 05, 2001 1:10 PM > > > > > > Subject: [] 'probable CMT' > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > > > My name is and I am searching for some answers. I began > > > > searching > > > > > > the internet to put a name to a disease which my father has. > Since > > > > > > beginning to research this disease, I have begun to suspect that I > > > share > > > > > it. > > > > > > I have voiced my concerns to my Doctor, but we have been > > concentrating > > > > on > > > > > my > > > > > > Fibromyalgia, which I have had for about 11 years. My father has > > had > > > > > nerve > > > > > > biopsies of his leg and the conclusion is that he has " some form " > of > > > > > > demyelinating disease, but they have not given it a name. When I > > > copied > > > > > > some information off the internet about CMT and gave it to him to > > > read, > > > > he > > > > > > said that it was like somebody had crawled inside his head and > knew > > > > > exactly > > > > > > how he was feeling. While I have Fibromyalgia, he has Rheumatoid > > > > > Arthritis, > > > > > > and we both have had carpal tunnel (he has had one release, I have > > had > > > > one > > > > > > on each hand as well as an ulnar nerve release). > > > > > > > I have read that this disease can be determined by genetic blood > > > > > testing, > > > > > > but I am dubious about convincing my doctor to perform this as I > am > > a > > > > > > retired military dependant and if the test is really expensive or > > > > > difficult, > > > > > > it's like lobbying congress to get approval. Since CMT is > > hereditary, > > > I > > > > > > would really like to know so that my Father will finally be able > to > > > put > > > > a > > > > > > name to his disease and can maybe come to grips with it. He has > > lost > > > > most > > > > > > of the feeling in his legs below the knees and is therefore mostly > > > > > > wheelchair bound as he has a very poor sense of balance. He is > also > > > > > > diabetic, as am I. I have two sisters who are also diabetic and > > have > > > > > begun > > > > > > having trouble with the feeling in their hands, and my elder > sister > > > has > > > > a > > > > > > big problem with hammer toes. It all really sounds like CMT to me > > and > > > I > > > > > > wouldn't be honest if I didn't admit to being scared. I still > have > > > two > > > > > kids > > > > > > in middle school and one in college. I understand that there is no > > > cure > > > > > for > > > > > > CMT and that the severity of it varies greatly in families > > sometimes, > > > > but > > > > > I > > > > > > need to know if there is any therapy that I can take to help or if > > > there > > > > > are > > > > > > some medications that I take for other health problems that are > bad > > > for > > > > me > > > > > > if I have CMT. I have read that Prozac doesn't mix well with > > > > > > Dextromethorphan or Pseudoephedrine. I work in a very high stress > > job > > > > > that > > > > > > I am unable to quit at present and dealing with chronic pain is a > > real > > > > > > downer. The Prozac has really really helped and I would hate to > > quit > > > > > taking > > > > > > it. Dosen't do anything for the pain, but really helps me to cope > > > with > > > > > it. > > > > > > > Thank You so much for providing a site for me to get this off of > > my > > > > > chest. > > > > > > I know this is a really long letter, but if any of you get to the > > end > > > of > > > > > it > > > > > > and have any ideas, information or suggestions for me I would be > so > > > > > grateful > > > > > > to hear from you. Actually, it's just nice to know that there are > > > other > > > > > > functioning people out there who are dealing with the same thing. > > The > > > > > main > > > > > > thing that I would like to know is how you go about getting > > diagnosed? > > > > > > > Thanks Again, > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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