Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 Hi I believe there are like 20 different types. The MDA paid for my blood test to find out what type I had which is CMT1A. I have no idea about private insurances you could find out first if MDA would help. Well I have not been on the pc much was not doing well physically had pulled hamstring muscles in both legs from just walking around the mall, go figure that one out. Then after I was healed up from that I again was laid up on the couch for about 3 days with lots of pain in my legs and do not know the reason my legs were feeling very weak, like spaghetti I would say hheeheh. I am doing much better now and hope it continues. I will be starting another semester at college. Will be taking Child abuse and Neglect and Interpersonal Communications. I get busy but have not forgotten about any of you. Soon college will be over (June). Me and my fiance' will be getting married in July. The kids are doing well other than my oldest son taking a fall at school. Well hope all of you had a Happy New Year! Heidi Gretchen Glick wrote: > Hi Mark, for the genetics info try > http://www.ultranet.com~smith/CMTnet.html or also maybe > http://www.mdausa.org/publicationss/fa-cmt.html > I think only 3 types of CMT are currently found through the DNA > testing.I am not certain exactly how many " types " of CMT there are > currently. As for sources to pay for these expensive tests, I don't know > of any, but I am wondering if the tests were done through an MDA clinic, > if they would pay for them. Anybody know? Anybody know if one's private > health insurance will pay for these tests? And Marc,it is a good thing > to learn as much as you can about CMT. So many of us are affected so > differently. > Feel free to bring up any topics over and over. I don't know about you > all, but it takes awhile sometimes before some things sink in! > Gretchen > > Regan, MD wrote: > > > > Thank you, Gretchen. Although I was diagnosed many years ago and have been > > using forearm crutches since I was 14 yrs. old, this sort of group thing is > > new to me. Thank you for your patience. > > > > Now this may be a subject which has been discussed and considered to the > > point of exhaustion, but still I will ask for any info anyone has. It is > > this: I need to know about the latest genetic findings, research, testing > > that is being done. I understand that life with this disease means a lot of > > waiting and acceptance but I would like to take an ACTIVE role in managing > > and understanding the conditions which come with CMT. I had some genetic > > testing done in '95, before the birth of my son, but they were able to find > > nothing. From what I hear knowledge and capabilities in this area (genetic > > testing) has advanced since the mid-nineties. Of course, these tests are > > quite expensive, so if anyone knows of assistance available (in paying for > > such testing), please, let me know. I guess I want to know what exactly this > > thing is I've got (the CMT diagnoses seems so wide, with many different > > faces), then I can perhaps figure the best way to handle the future of my > > own disease and the possibility of it rearing its head in one of my kids' > > lives. > > > > Any feedback would be great. Thanks. > > Peace, > > Marc > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 In a message dated 1/7/00 6:31:22 PM, klydesid@... writes: << What does MDA stand for and how would I go about contacting these folks. >> MDA = Muscular Dystrophy Association. They are in your phone book. Call for an appointment. The units vary a lot. Many are very helpful. Some are not. If you have already been diagnosed what are you hoping for now? I'm always curious. In case there is any confusion, none of the types is treatable and the type doesn't indicate what symptoms you'll have (of the common types). Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Thank you, Heidi. I do appreciate the info. I have a stupid question, though. What does MDA stand for and how would I go about contacting these folks. Thanks all! Marc Regan ----- Original Message ----- From: Heidi S. Willey <specedu@...> <onelist> Sent: Thursday, January 06, 2000 6:55 AM Subject: Re: [] genetics & Hello > Hi I believe there are like 20 different types. The MDA paid for my blood test to > find out what type I had which is CMT1A. I have no idea about private insurances > you could find out first if MDA would help. > Well I have not been on the pc much was not doing well physically had pulled > hamstring muscles in both legs from just walking around the mall, go figure that > one out. Then after I was healed up from that I again was laid up on the couch for > about 3 days with lots of pain in my legs and do not know the reason my legs were > feeling very weak, like spaghetti I would say hheeheh. I am doing much better now > and hope it continues. I will be starting another semester at college. Will be > taking Child abuse and Neglect and Interpersonal Communications. I get busy but > have not forgotten about any of you. Soon college will be over (June). Me and my > fiance' will be getting married in July. The kids are doing well other than my > oldest son taking a fall at school. Well hope all of you had a Happy New Year! > Heidi > > Gretchen Glick wrote: > > > Hi Mark, for the genetics info try > > http://www.ultranet.com~smith/CMTnet.html or also maybe > > http://www.mdausa.org/publicationss/fa-cmt.html > > I think only 3 types of CMT are currently found through the DNA > > testing.I am not certain exactly how many " types " of CMT there are > > currently. As for sources to pay for these expensive tests, I don't know > > of any, but I am wondering if the tests were done through an MDA clinic, > > if they would pay for them. Anybody know? Anybody know if one's private > > health insurance will pay for these tests? And Marc,it is a good thing > > to learn as much as you can about CMT. So many of us are affected so > > differently. > > Feel free to bring up any topics over and over. I don't know about you > > all, but it takes awhile sometimes before some things sink in! > > Gretchen > > > > Regan, MD wrote: > > > > > > Thank you, Gretchen. Although I was diagnosed many years ago and have been > > > using forearm crutches since I was 14 yrs. old, this sort of group thing is > > > new to me. Thank you for your patience. > > > > > > Now this may be a subject which has been discussed and considered to the > > > point of exhaustion, but still I will ask for any info anyone has. It is > > > this: I need to know about the latest genetic findings, research, testing > > > that is being done. I understand that life with this disease means a lot of > > > waiting and acceptance but I would like to take an ACTIVE role in managing > > > and understanding the conditions which come with CMT. I had some genetic > > > testing done in '95, before the birth of my son, but they were able to find > > > nothing. From what I hear knowledge and capabilities in this area (genetic > > > testing) has advanced since the mid-nineties. Of course, these tests are > > > quite expensive, so if anyone knows of assistance available (in paying for > > > such testing), please, let me know. I guess I want to know what exactly this > > > thing is I've got (the CMT diagnoses seems so wide, with many different > > > faces), then I can perhaps figure the best way to handle the future of my > > > own disease and the possibility of it rearing its head in one of my kids' > > > lives. > > > > > > Any feedback would be great. Thanks. > > > Peace, > > > Marc > > > > > > --------------------------- ONElist Sponsor ---------------------------- > > > > > > Get great offers on top-notch products that match your interests! > > > Sign up for eLerts at: > > > <a href= " http://clickme.onelist.com/ad/elerts1 " >Click Here</a> > > > > > > ------------------------------------------------------------------------ > > > > > > -- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Hi Marc, Peggie here. Where are you? And, if you don't mind, what are your current symptoms? I can't remember if you have written about them or not, sorry, if you have. Have a good evening. ----- Original Message ----- From: Regan, MD <klydesid@...> <onelist> Sent: Friday, January 07, 2000 5:35 PM Subject: Re: [] genetics & Hello > Thank you, Heidi. I do appreciate the info. I have a stupid question, > though. What does MDA stand for and how would I go about contacting these > folks. Thanks all! Marc Regan > ----- Original Message ----- > From: Heidi S. Willey <specedu@...> > <onelist> > Sent: Thursday, January 06, 2000 6:55 AM > Subject: Re: [] genetics & Hello > > > > Hi I believe there are like 20 different types. The MDA paid for my blood > test to > > find out what type I had which is CMT1A. I have no idea about private > insurances > > you could find out first if MDA would help. > > Well I have not been on the pc much was not doing well physically had > pulled > > hamstring muscles in both legs from just walking around the mall, go > figure that > > one out. Then after I was healed up from that I again was laid up on the > couch for > > about 3 days with lots of pain in my legs and do not know the reason my > legs were > > feeling very weak, like spaghetti I would say hheeheh. I am doing much > better now > > and hope it continues. I will be starting another semester at college. > Will be > > taking Child abuse and Neglect and Interpersonal Communications. I get > busy but > > have not forgotten about any of you. Soon college will be over (June). Me > and my > > fiance' will be getting married in July. The kids are doing well other > than my > > oldest son taking a fall at school. Well hope all of you had a Happy New > Year! > > Heidi > > > > Gretchen Glick wrote: > > > > > Hi Mark, for the genetics info try > > > http://www.ultranet.com~smith/CMTnet.html or also maybe > > > http://www.mdausa.org/publicationss/fa-cmt.html > > > I think only 3 types of CMT are currently found through the DNA > > > testing.I am not certain exactly how many " types " of CMT there are > > > currently. As for sources to pay for these expensive tests, I don't know > > > of any, but I am wondering if the tests were done through an MDA clinic, > > > if they would pay for them. Anybody know? Anybody know if one's private > > > health insurance will pay for these tests? And Marc,it is a good thing > > > to learn as much as you can about CMT. So many of us are affected so > > > differently. > > > Feel free to bring up any topics over and over. I don't know about you > > > all, but it takes awhile sometimes before some things sink in! > > > Gretchen > > > > > > Regan, MD wrote: > > > > > > > > Thank you, Gretchen. Although I was diagnosed many years ago and have > been > > > > using forearm crutches since I was 14 yrs. old, this sort of group > thing is > > > > new to me. Thank you for your patience. > > > > > > > > Now this may be a subject which has been discussed and considered to > the > > > > point of exhaustion, but still I will ask for any info anyone has. It > is > > > > this: I need to know about the latest genetic findings, research, > testing > > > > that is being done. I understand that life with this disease means a > lot of > > > > waiting and acceptance but I would like to take an ACTIVE role in > managing > > > > and understanding the conditions which come with CMT. I had some > genetic > > > > testing done in '95, before the birth of my son, but they were able to > find > > > > nothing. From what I hear knowledge and capabilities in this area > (genetic > > > > testing) has advanced since the mid-nineties. Of course, these tests > are > > > > quite expensive, so if anyone knows of assistance available (in paying > for > > > > such testing), please, let me know. I guess I want to know what > exactly this > > > > thing is I've got (the CMT diagnoses seems so wide, with many > different > > > > faces), then I can perhaps figure the best way to handle the future of > my > > > > own disease and the possibility of it rearing its head in one of my > kids' > > > > lives. > > > > > > > > Any feedback would be great. Thanks. > > > > Peace, > > > > Marc > > > > > > > > --------------------------- ONElist > Sponsor ---------------------------- > > > > > > > > Get great offers on top-notch products that match your interests! > > > > Sign up for eLerts at: > > > > <a href= " http://clickme.onelist.com/ad/elerts1 " >Click Here</a> > > > > > > > > > ------------------------------------------------------------------------ > > > > > > > > -- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 Hi, As a wise one once told me the only stupid question is the one not asked. MDA stands for Muscular Dystrophy Association. Where are you located exactly? There must be one in your area. Heidi " Regan, MD " wrote: > Thank you, Heidi. I do appreciate the info. I have a stupid question, > though. What does MDA stand for and how would I go about contacting these > folks. Thanks all! Marc Regan > ----- Original Message ----- > From: Heidi S. Willey <specedu@...> > <onelist> > Sent: Thursday, January 06, 2000 6:55 AM > Subject: Re: [] genetics & Hello > > > Hi I believe there are like 20 different types. The MDA paid for my blood > test to > > find out what type I had which is CMT1A. I have no idea about private > insurances > > you could find out first if MDA would help. > > Well I have not been on the pc much was not doing well physically had > pulled > > hamstring muscles in both legs from just walking around the mall, go > figure that > > one out. Then after I was healed up from that I again was laid up on the > couch for > > about 3 days with lots of pain in my legs and do not know the reason my > legs were > > feeling very weak, like spaghetti I would say hheeheh. I am doing much > better now > > and hope it continues. I will be starting another semester at college. > Will be > > taking Child abuse and Neglect and Interpersonal Communications. I get > busy but > > have not forgotten about any of you. Soon college will be over (June). Me > and my > > fiance' will be getting married in July. The kids are doing well other > than my > > oldest son taking a fall at school. Well hope all of you had a Happy New > Year! > > Heidi > > > > Gretchen Glick wrote: > > > > > Hi Mark, for the genetics info try > > > http://www.ultranet.com~smith/CMTnet.html or also maybe > > > http://www.mdausa.org/publicationss/fa-cmt.html > > > I think only 3 types of CMT are currently found through the DNA > > > testing.I am not certain exactly how many " types " of CMT there are > > > currently. As for sources to pay for these expensive tests, I don't know > > > of any, but I am wondering if the tests were done through an MDA clinic, > > > if they would pay for them. Anybody know? Anybody know if one's private > > > health insurance will pay for these tests? And Marc,it is a good thing > > > to learn as much as you can about CMT. So many of us are affected so > > > differently. > > > Feel free to bring up any topics over and over. I don't know about you > > > all, but it takes awhile sometimes before some things sink in! > > > Gretchen > > > > > > Regan, MD wrote: > > > > > > > > Thank you, Gretchen. Although I was diagnosed many years ago and have > been > > > > using forearm crutches since I was 14 yrs. old, this sort of group > thing is > > > > new to me. Thank you for your patience. > > > > > > > > Now this may be a subject which has been discussed and considered to > the > > > > point of exhaustion, but still I will ask for any info anyone has. It > is > > > > this: I need to know about the latest genetic findings, research, > testing > > > > that is being done. I understand that life with this disease means a > lot of > > > > waiting and acceptance but I would like to take an ACTIVE role in > managing > > > > and understanding the conditions which come with CMT. I had some > genetic > > > > testing done in '95, before the birth of my son, but they were able to > find > > > > nothing. From what I hear knowledge and capabilities in this area > (genetic > > > > testing) has advanced since the mid-nineties. Of course, these tests > are > > > > quite expensive, so if anyone knows of assistance available (in paying > for > > > > such testing), please, let me know. I guess I want to know what > exactly this > > > > thing is I've got (the CMT diagnoses seems so wide, with many > different > > > > faces), then I can perhaps figure the best way to handle the future of > my > > > > own disease and the possibility of it rearing its head in one of my > kids' > > > > lives. > > > > > > > > Any feedback would be great. Thanks. > > > > Peace, > > > > Marc > > > > > > > > --------------------------- ONElist > Sponsor ---------------------------- > > > > > > > > Get great offers on top-notch products that match your interests! > > > > Sign up for eLerts at: > > > > <a href= " http://clickme.onelist.com/ad/elerts1 " >Click Here</a> > > > > > > > > > ------------------------------------------------------------------------ > > > > > > > > -- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 I live in the mountains an hour and a half outside of Eureka, California. Blocksburg (300 people), where I live, is very rural and beautiful, but not many services. Eureka is fairly big, though, and might. Yes, Heidi, I am slowly learning to ask...no matter how sensible the question seems. I have found that, as well as getting useful info, priceless connections with others are made in this way. I guess I'll keep practicing...exercising the " asking muscle. " ....So hang on to your hat, I have got a warehouse full of questions! However, I have little time to type any now. Some things to look forward to ;0) I do want to thank everyone for their feedback and useful info; this disease can at times make one's life seem solitary, and even lonely. The majority of people without CMT, or some similar challenge, can't seem to truly understand the daily ramifications. I'm glad I found you all. Peace, Marc ----- Original Message ----- From: Heidi S. Willey <specedu@...> <onelist> Sent: Sunday, January 09, 2000 11:29 AM Subject: Re: [] genetics & Hello > From: " Heidi S. Willey " <specedu@...> > > Hi, > As a wise one once told me the only stupid question is the one not asked. MDA > stands for Muscular Dystrophy Association. Where are you located exactly? There > must be one in your area. > Heidi > > " Regan, MD " wrote: > > > Thank you, Heidi. I do appreciate the info. I have a stupid question, > > though. What does MDA stand for and how would I go about contacting these > > folks. Thanks all! Marc Regan > > ----- Original Message ----- > > From: Heidi S. Willey <specedu@...> > > <onelist> > > Sent: Thursday, January 06, 2000 6:55 AM > > Subject: Re: [] genetics & Hello > > > > > Hi I believe there are like 20 different types. The MDA paid for my blood > > test to > > > find out what type I had which is CMT1A. I have no idea about private > > insurances > > > you could find out first if MDA would help. > > > Well I have not been on the pc much was not doing well physically had > > pulled > > > hamstring muscles in both legs from just walking around the mall, go > > figure that > > > one out. Then after I was healed up from that I again was laid up on the > > couch for > > > about 3 days with lots of pain in my legs and do not know the reason my > > legs were > > > feeling very weak, like spaghetti I would say hheeheh. I am doing much > > better now > > > and hope it continues. I will be starting another semester at college. > > Will be > > > taking Child abuse and Neglect and Interpersonal Communications. I get > > busy but > > > have not forgotten about any of you. Soon college will be over (June). Me > > and my > > > fiance' will be getting married in July. The kids are doing well other > > than my > > > oldest son taking a fall at school. Well hope all of you had a Happy New > > Year! > > > Heidi > > > > > > Gretchen Glick wrote: > > > > > > > Hi Mark, for the genetics info try > > > > http://www.ultranet.com~smith/CMTnet.html or also maybe > > > > http://www.mdausa.org/publicationss/fa-cmt.html > > > > I think only 3 types of CMT are currently found through the DNA > > > > testing.I am not certain exactly how many " types " of CMT there are > > > > currently. As for sources to pay for these expensive tests, I don't know > > > > of any, but I am wondering if the tests were done through an MDA clinic, > > > > if they would pay for them. Anybody know? Anybody know if one's private > > > > health insurance will pay for these tests? And Marc,it is a good thing > > > > to learn as much as you can about CMT. So many of us are affected so > > > > differently. > > > > Feel free to bring up any topics over and over. I don't know about you > > > > all, but it takes awhile sometimes before some things sink in! > > > > Gretchen > > > > > > > > Regan, MD wrote: > > > > > > > > > > Thank you, Gretchen. Although I was diagnosed many years ago and have > > been > > > > > using forearm crutches since I was 14 yrs. old, this sort of group > > thing is > > > > > new to me. Thank you for your patience. > > > > > > > > > > Now this may be a subject which has been discussed and considered to > > the > > > > > point of exhaustion, but still I will ask for any info anyone has. It > > is > > > > > this: I need to know about the latest genetic findings, research, > > testing > > > > > that is being done. I understand that life with this disease means a > > lot of > > > > > waiting and acceptance but I would like to take an ACTIVE role in > > managing > > > > > and understanding the conditions which come with CMT. I had some > > genetic > > > > > testing done in '95, before the birth of my son, but they were able to > > find > > > > > nothing. From what I hear knowledge and capabilities in this area > > (genetic > > > > > testing) has advanced since the mid-nineties. Of course, these tests > > are > > > > > quite expensive, so if anyone knows of assistance available (in paying > > for > > > > > such testing), please, let me know. I guess I want to know what > > exactly this > > > > > thing is I've got (the CMT diagnoses seems so wide, with many > > different > > > > > faces), then I can perhaps figure the best way to handle the future of > > my > > > > > own disease and the possibility of it rearing its head in one of my > > kids' > > > > > lives. > > > > > > > > > > Any feedback would be great. Thanks. > > > > > Peace, > > > > > Marc > > > > > > > > > > --------------------------- ONElist > > Sponsor ---------------------------- > > > > > > > > > > Get great offers on top-notch products that match your interests! > > > > > Sign up for eLerts at: > > > > > <a href= " http://clickme.onelist.com/ad/elerts1 " >Click Here</a> > > > > > > > > > > > > ------------------------------------------------------------------------ > > > > > > > > > > -- > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 Hello, The one thing that helps me is if I ask for wonderful things to happen they will, if I go around being sad or down then not so good things happen. Having a positive outlook and learning the lessons from our " disability " and to teach others makes it all worth it. I am not saying I don't have days that are not so good, because this is not so. I would say although, that 95% of the time I am happy and have a wonderful life. I do not take any pain meds or depression medications. Many doctors are in awe about this and I tell them that my spirituality is what keeps me in check. I do have pain, I have never lived a day without it, but I am learning to pace myself and feel that with my positive outlook there is less pain. For me it is a mind set that will get me through each day. I have no one in my area to talk to about CMT since I live in a very small town and 90% of them look at me like I am a bit off my rocker when I tell them that I have CMT since they have never even heard of it. One thing that works for me is that each day I say at least one thing positive and gradually over time things get better. I also have three children and they deal with it quite well too. Since they know to be differen is to be special. And to be special means you aren't like everyone else, hence the saying " Great minds think for themselves " . Thank you, Heidi " Regan, MD " wrote: > From: " Regan, MD " <klydesid@...> > > I live in the mountains an hour and a half outside of Eureka, California. > Blocksburg (300 people), where I live, is very rural and beautiful, but not > many services. Eureka is fairly big, though, and might. > Yes, Heidi, I am slowly learning to ask...no matter how sensible the > question seems. I have found that, as well as getting useful info, priceless > connections with others are made in this way. I guess I'll keep > practicing...exercising the " asking muscle. " > ...So hang on to your hat, I have got a warehouse full of questions! > However, I have little time to type any now. Some things to look forward to > ;0) > I do want to thank everyone for their feedback and useful info; this disease > can at times make one's life seem solitary, and even lonely. The majority of > people without CMT, or some similar challenge, can't seem to truly > understand the daily ramifications. I'm glad I found you all. > Peace, > Marc > ----- Original Message ----- > From: Heidi S. Willey <specedu@...> > <onelist> > Sent: Sunday, January 09, 2000 11:29 AM > Subject: Re: [] genetics & Hello > > > From: " Heidi S. Willey " <specedu@...> > > > > Hi, > > As a wise one once told me the only stupid question is the one not asked. > MDA > > stands for Muscular Dystrophy Association. Where are you located exactly? > There > > must be one in your area. > > Heidi > > > > " Regan, MD " wrote: > > > > > Thank you, Heidi. I do appreciate the info. I have a stupid question, > > > though. What does MDA stand for and how would I go about contacting > these > > > folks. Thanks all! Marc Regan > > > ----- Original Message ----- > > > From: Heidi S. Willey <specedu@...> > > > <onelist> > > > Sent: Thursday, January 06, 2000 6:55 AM > > > Subject: Re: [] genetics & Hello > > > > > > > Hi I believe there are like 20 different types. The MDA paid for my > blood > > > test to > > > > find out what type I had which is CMT1A. I have no idea about private > > > insurances > > > > you could find out first if MDA would help. > > > > Well I have not been on the pc much was not doing well physically > had > > > pulled > > > > hamstring muscles in both legs from just walking around the mall, go > > > figure that > > > > one out. Then after I was healed up from that I again was laid up on > the > > > couch for > > > > about 3 days with lots of pain in my legs and do not know the reason > my > > > legs were > > > > feeling very weak, like spaghetti I would say hheeheh. I am doing much > > > better now > > > > and hope it continues. I will be starting another semester at college. > > > Will be > > > > taking Child abuse and Neglect and Interpersonal Communications. I get > > > busy but > > > > have not forgotten about any of you. Soon college will be over (June). > Me > > > and my > > > > fiance' will be getting married in July. The kids are doing well other > > > than my > > > > oldest son taking a fall at school. Well hope all of you had a Happy > New > > > Year! > > > > Heidi > > > > > > > > Gretchen Glick wrote: > > > > > > > > > Hi Mark, for the genetics info try > > > > > http://www.ultranet.com~smith/CMTnet.html or also maybe > > > > > http://www.mdausa.org/publicationss/fa-cmt.html > > > > > I think only 3 types of CMT are currently found through the DNA > > > > > testing.I am not certain exactly how many " types " of CMT there are > > > > > currently. As for sources to pay for these expensive tests, I don't > know > > > > > of any, but I am wondering if the tests were done through an MDA > clinic, > > > > > if they would pay for them. Anybody know? Anybody know if one's > private > > > > > health insurance will pay for these tests? And Marc,it is a good > thing > > > > > to learn as much as you can about CMT. So many of us are affected so > > > > > differently. > > > > > Feel free to bring up any topics over and over. I don't know about > you > > > > > all, but it takes awhile sometimes before some things sink in! > > > > > Gretchen > > > > > > > > > > Regan, MD wrote: > > > > > > > > > > > > Thank you, Gretchen. Although I was diagnosed many years ago and > have > > > been > > > > > > using forearm crutches since I was 14 yrs. old, this sort of group > > > thing is > > > > > > new to me. Thank you for your patience. > > > > > > > > > > > > Now this may be a subject which has been discussed and considered > to > > > the > > > > > > point of exhaustion, but still I will ask for any info anyone has. > It > > > is > > > > > > this: I need to know about the latest genetic findings, research, > > > testing > > > > > > that is being done. I understand that life with this disease means > a > > > lot of > > > > > > waiting and acceptance but I would like to take an ACTIVE role in > > > managing > > > > > > and understanding the conditions which come with CMT. I had some > > > genetic > > > > > > testing done in '95, before the birth of my son, but they were > able to > > > find > > > > > > nothing. From what I hear knowledge and capabilities in this area > > > (genetic > > > > > > testing) has advanced since the mid-nineties. Of course, these > tests > > > are > > > > > > quite expensive, so if anyone knows of assistance available (in > paying > > > for > > > > > > such testing), please, let me know. I guess I want to know what > > > exactly this > > > > > > thing is I've got (the CMT diagnoses seems so wide, with many > > > different > > > > > > faces), then I can perhaps figure the best way to handle the > future of > > > my > > > > > > own disease and the possibility of it rearing its head in one of > my > > > kids' > > > > > > lives. > > > > > > > > > > > > Any feedback would be great. Thanks. > > > > > > Peace, > > > > > > Marc > > > > > > > > > > > > --------------------------- ONElist > > > Sponsor ---------------------------- > > > > > > > > > > > > Get great offers on top-notch products that match your interests! > > > > > > Sign up for eLerts at: > > > > > > <a href= " http://clickme.onelist.com/ad/elerts1 " >Click Here</a> > > > > > > > > > > > > > > > > ------------------------------------------------------------------------ > > > > > > > > > > > > -- > > > > > > Quote Link to comment Share on other sites More sharing options...
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