Guest guest Posted March 14, 1999 Report Share Posted March 14, 1999 Hi ginger, Welcome to the group. You'll learn a lot here! Everyone tries to be very helpful. I've been on sinemet for a very long time, & so far, am having fairly good results. My doctor tried me on other meds, but they didn't agree with me in one way or another. What strength did your dr. start you on, & how often do you take it? Have good nights! Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 1999 Report Share Posted March 14, 1999 Hi ginger, Welcome to the group. You'll learn a lot here! Everyone tries to be very helpful. I've been on sinemet for a very long time, & so far, am having fairly good results. My doctor tried me on other meds, but they didn't agree with me in one way or another. What strength did your dr. start you on, & how often do you take it? Have good nights! Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 1999 Report Share Posted March 19, 1999 Hi Meg, sorry it took so long to get back to you, had some sort of flu, all gone now. On Sinemt 25/100 t.i.d., three times a day. From what I have already read this is maybe the old standby, but seems to have less side effects then some of the new designer drugs. I worked in a hospital for years until retiring on disability and found a lot of the so called old drugs worked much better and with less side effects then the new chemical designers. so far so good, been on since, I believe, September. No problems unless I sit down approximately one hour after taking then I sort of have a short nap. Oh well, I can always use one. As long as I keep moving the sleepiness passes within a few minutes. Or if I feel it " coming on " I get up and walk around then passes. Other then that, no problems with Sinemet at all. Was so glad doc recognized what it was. What a relief. I suffer also from the, oh what is the fancy name they have for it, well it's actually myoclonus, legs, arms etc. jerk. This is how all started then progressed to the creepies. My poor mother suffered for years. Would not go to doc even when I told her what it was. Her reply was that everyone else in the family had it so why bother. BUT, this is years and years later Mom and there is something to do. After I got on meds, she went to doctor with brochure from RLS foundation and now she is symptom free, almost, he has her taking one and one-half pill per day. So she takes at night before going to bed and during the day, one-half for relief but still has some. Difference in doctors. Okay, now that I've told you half my life story, get back to me if you wish, it's always nice to correspond with some one and since I got on net is reallly nice, all goes so fast and replies come back fast also. Take care and you too rest quiet. Ginger At 13:05 3/14/99 -0500, MEG G. wrote: >Hi ginger, > >Welcome to the group. >You'll learn a lot here! Everyone tries to be very helpful. > >I've been on sinemet for a very long time, & so far, am having fairly >good results. My doctor tried me on other meds, but they didn't agree >with me in one way or another. What strength did your dr. start you on, >& how often do you take it? > >Have good nights! >Meg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 1999 Report Share Posted April 26, 1999 Hi to Lee and all the other newcomers - Yes, Lee, I think we all experience that " ache to move " , the jittery, jumpy feeling in the legs. However, mine is more concentrated in the knees and they feel like they are going to explode if I don't move them. This seems to be rare in rls and only a couple of other list members experience this. If I don't move my legs, then they will jerk. I also have some pain in the knee and shin mostly at night. I took tylenol pm for 2 years, but had to get off that due to some minor side effects. I have not been to a doctor to diagnose this and don't take medications other that ibuprofen...sometimes melatonin to help me get to sleep. I have had this since I was a child, starting with " growing pains " then around 12 years of age, the uncontrollable need to MOVE my legs or I would go nuts. And it is still with me. 1000 times worse during 2 pregnancies and following that, but now it has calmed considerably.for the last 2 years plus. Hope this continues. Now, it mostly happens at night and will wake me up or if I have to sit for long periods of time. Just wanted to give " ya'll " some idea of some symptoms. Hope you continue to converse with us. Lynn 45, Ga. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 1999 Report Share Posted April 26, 1999 There have been nights that I have been really tired and wanted to go to bed at a decent hour, but I cant because my legs feel like they are going to run a marathon with or without me. i think that the best way to describe the feeling is jittery and even " pent up " ... Then there are nights that I am not even tired, and I feel like it is twelve o'clock at in the afternoon when it is really twelve o'clock in the morning. And lately is has been happening during the day, where Ill be sitting down and my legs will want to be bouncing up and down and the muscles will ache for movement... Is this anything like what anyone else experiences? Lee _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 1999 Report Share Posted April 26, 1999 Lee, I know exactly what you are going through! I have been going through that for a few years now. It definitely sounds like RLS to me. Have you talked to a doctor about it? I have had the daytime discomfort at work. The only thing I can do when that occurs is walk around. I would walk to the bathroom and jump up and down. My boss thought it was strange that I would go to the bathroom so much, so I had to explain to her what was going on. She was very sympathetic towards me. The cause of the daytime RLS was the Sinemet that I was on. It causes a rebound effect that actually worsens the RLS. Good medicine to take, huh? I stopped taking the Sinemet because it was causing depression and the rebound effect. I have felt much better, but I still get the RLS at night when watching tv, reading, or trying to go to sleep. I also have PLMS, periodic limb movements of sleep, where I thrash and kick in my sleep. I always wondered why my husband ended up with all the blankets, but it's actually because I move so much that I push them off me and over to his side. I wish you luck in getting better. Keep in touch! , 25, Massachusetts _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 Cathy I never thought my EMG or NC was painful, more annoying than anythng. By the way I am in Indiana too. Danieta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 Cathy, My EMG and NC study was very painful. I guess everyone is different. I hope yours is a breeze and I'll keep my fingers crossed for you. Cathy C in Louisiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 << In anyone's experience, did anyone start out with just numbness and tingling and muscle weakness. I have no other symptoms, I do have a high foot arch, but it's not as bad as my mom's. My right foot turns way in when I walk alot and become very tired. I had never thought that the EMG and NC test were painful. Now, after reading through some of the messages I am quite nervous about having this done. >> ====== Hi Cathy, How are your mom and grandma doing? Even within families we vary a lot. Just numbness and tingling and muscle weakness was how I started, and that wasn't until I was in my 50s. My mom's weakness didn't start until she was in her 70s. Low arches for us. My EMG was a fascinating but pain-free event. We do vary a lot. I've been told it helps to be very relaxed, as I know I was. I knew nothing about what was about to happen so I was absorbed with watching the monitor and didn't feel anything unpleasant. I was aware that she was sticking me with fine needles, but I didn't feel them. Afterwards I asked her if my legs would leak from all the holes. If you do have CMT, ask for the results in writing to refer to later. Also, ask what type you have (if you have CMT at all), if you don't know the type that runs in your family. Good luck! Kat in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 Hi, New to Group ... My CMT was diagnosed about a month ago ... the foot pain caused me to seek out help. Started hurting about three years ago during my separation and divorce. I didn't have any pain before entering into the stress of losing my wife. I always had trouble balancing on one leg, loved athletics, and participated all my life, but was never really good at them ... tried anyway though. As a kid, I sprained my ankles a lot. I have inherited my Mom's toes .... weirdest looking things. Now, I get a lot of foot pain, especially in the toes. The cramps are very painful and I am trying to find medications that relax the cramping without doing a lot of long term harm. Lots of good suggestions from nice people on this site. I keep checking in for more advise and knowledge. Hang in there, Ms. New to the Group ... ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 Hi, New to Group ... My CMT was diagnosed about a month ago ... the foot pain caused me to seek out help. Started hurting about three years ago during my separation and divorce. I didn't have any pain before entering into the stress of losing my wife. I always had trouble balancing on one leg, loved athletics, and participated all my life, but was never really good at them ... tried anyway though. As a kid, I sprained my ankles a lot. I have inherited my Mom's toes .... weirdest looking things. Now, I get a lot of foot pain, especially in the toes. The cramps are very painful and I am trying to find medications that relax the cramping without doing a lot of long term harm. Lots of good suggestions from nice people on this site. I keep checking in for more advise and knowledge. Hang in there, Ms. New to the Group ... ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 Hi, New to Group ... My CMT was diagnosed about a month ago ... the foot pain caused me to seek out help. Started hurting about three years ago during my separation and divorce. I didn't have any pain before entering into the stress of losing my wife. I always had trouble balancing on one leg, loved athletics, and participated all my life, but was never really good at them ... tried anyway though. As a kid, I sprained my ankles a lot. I have inherited my Mom's toes .... weirdest looking things. Now, I get a lot of foot pain, especially in the toes. The cramps are very painful and I am trying to find medications that relax the cramping without doing a lot of long term harm. Lots of good suggestions from nice people on this site. I keep checking in for more advise and knowledge. Hang in there, Ms. New to the Group ... ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 Welcome Cathy, Lamar (RNC from GA) here, Some say the NCV is painful, but to me it was just slightly uncomfortable. Most experience no pain with an EMG. If you know the type of CMT in your family, and it is Type 1-A or B, X-linked, or HNPP, there are DNA tests available from Athena Diagnostics, to test for these types. They will not show other types,. Diagnosis of CMT is based upon symptoms, family history, electrical testing and/or blood testing. as well as possible muscle and nerve biopsies. As you well know, only a physician can diagnose. While not wanting to alarm you, you have stated you have a family history and mentioned five of the symptoms frequently seen first. A complete evaluation would certainly be advisable. You may not know, but with the family history, the area MDA clinic will assess you without charges. You may want to look into this. I wish you luck. No matter what the result of the evaluation, you will find a LOT of support and knowledge about CMT on this and other CMT lists. I am 52 and had to retire after 30 years in psychiatric health care about 2 1/2 years ago (14 as an RN). Incidentally my mother and grandmother had CMT. I well remember the stress and tension I went through when I was being evaluated about 20 years ago. Therefore, I can empathize with what you are facing. You do need to know, and are taking the right steps. Please utilize the list to ask any questions, and offer the support you need at this time. -------------------------------------------------------------------------------- Please visit " Lamar's Place " , my first efforts at webpages, and sign the guest book. www.angelfire.com/ga2/lamar/ Much more will be added. I am especially proud of the poem I wrote as a result of several dreams. www.angelfire.com/ga2/lamar/poem.html New To Group Hello to all! It is so wonderful to see a sight like this. I posted a message yesterday but I don't think I quite did it right. I live in Indiana. I am a registered nurse. My mom and grandma have CMT. I have just been recently experiencing alot of numbness and tingling and muscle weakness in my hands and feet. I have a neurology appt. on the 29th. I am going to request that the doctor order an EMG and Nerve Conduction Studies. I am praying that I am just needlessly panicking and this is not a start of symptoms of CMT. In anyone's experience, did anyone start out with just numbness and tingling and muscle weakness. I have no other symptoms, I do have a high foot arch, but it's not as bad as my mom's. My right foot turns way in when I walk alot and become very tired. I had never thought that the EMG and NC test were painful. Now, after reading through some of the messages I am quite nervous about having this done. Wish me luck! and pray for good results! Cathy ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 Welcome Cathy, Lamar (RNC from GA) here, Some say the NCV is painful, but to me it was just slightly uncomfortable. Most experience no pain with an EMG. If you know the type of CMT in your family, and it is Type 1-A or B, X-linked, or HNPP, there are DNA tests available from Athena Diagnostics, to test for these types. They will not show other types,. Diagnosis of CMT is based upon symptoms, family history, electrical testing and/or blood testing. as well as possible muscle and nerve biopsies. As you well know, only a physician can diagnose. While not wanting to alarm you, you have stated you have a family history and mentioned five of the symptoms frequently seen first. A complete evaluation would certainly be advisable. You may not know, but with the family history, the area MDA clinic will assess you without charges. You may want to look into this. I wish you luck. No matter what the result of the evaluation, you will find a LOT of support and knowledge about CMT on this and other CMT lists. I am 52 and had to retire after 30 years in psychiatric health care about 2 1/2 years ago (14 as an RN). Incidentally my mother and grandmother had CMT. I well remember the stress and tension I went through when I was being evaluated about 20 years ago. Therefore, I can empathize with what you are facing. You do need to know, and are taking the right steps. Please utilize the list to ask any questions, and offer the support you need at this time. -------------------------------------------------------------------------------- Please visit " Lamar's Place " , my first efforts at webpages, and sign the guest book. www.angelfire.com/ga2/lamar/ Much more will be added. I am especially proud of the poem I wrote as a result of several dreams. www.angelfire.com/ga2/lamar/poem.html New To Group Hello to all! It is so wonderful to see a sight like this. I posted a message yesterday but I don't think I quite did it right. I live in Indiana. I am a registered nurse. My mom and grandma have CMT. I have just been recently experiencing alot of numbness and tingling and muscle weakness in my hands and feet. I have a neurology appt. on the 29th. I am going to request that the doctor order an EMG and Nerve Conduction Studies. I am praying that I am just needlessly panicking and this is not a start of symptoms of CMT. In anyone's experience, did anyone start out with just numbness and tingling and muscle weakness. I have no other symptoms, I do have a high foot arch, but it's not as bad as my mom's. My right foot turns way in when I walk alot and become very tired. I had never thought that the EMG and NC test were painful. Now, after reading through some of the messages I am quite nervous about having this done. Wish me luck! and pray for good results! Cathy ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 Welcome Cathy, Lamar (RNC from GA) here, Some say the NCV is painful, but to me it was just slightly uncomfortable. Most experience no pain with an EMG. If you know the type of CMT in your family, and it is Type 1-A or B, X-linked, or HNPP, there are DNA tests available from Athena Diagnostics, to test for these types. They will not show other types,. Diagnosis of CMT is based upon symptoms, family history, electrical testing and/or blood testing. as well as possible muscle and nerve biopsies. As you well know, only a physician can diagnose. While not wanting to alarm you, you have stated you have a family history and mentioned five of the symptoms frequently seen first. A complete evaluation would certainly be advisable. You may not know, but with the family history, the area MDA clinic will assess you without charges. You may want to look into this. I wish you luck. No matter what the result of the evaluation, you will find a LOT of support and knowledge about CMT on this and other CMT lists. I am 52 and had to retire after 30 years in psychiatric health care about 2 1/2 years ago (14 as an RN). Incidentally my mother and grandmother had CMT. I well remember the stress and tension I went through when I was being evaluated about 20 years ago. Therefore, I can empathize with what you are facing. You do need to know, and are taking the right steps. Please utilize the list to ask any questions, and offer the support you need at this time. -------------------------------------------------------------------------------- Please visit " Lamar's Place " , my first efforts at webpages, and sign the guest book. www.angelfire.com/ga2/lamar/ Much more will be added. I am especially proud of the poem I wrote as a result of several dreams. www.angelfire.com/ga2/lamar/poem.html New To Group Hello to all! It is so wonderful to see a sight like this. I posted a message yesterday but I don't think I quite did it right. I live in Indiana. I am a registered nurse. My mom and grandma have CMT. I have just been recently experiencing alot of numbness and tingling and muscle weakness in my hands and feet. I have a neurology appt. on the 29th. I am going to request that the doctor order an EMG and Nerve Conduction Studies. I am praying that I am just needlessly panicking and this is not a start of symptoms of CMT. In anyone's experience, did anyone start out with just numbness and tingling and muscle weakness. I have no other symptoms, I do have a high foot arch, but it's not as bad as my mom's. My right foot turns way in when I walk alot and become very tired. I had never thought that the EMG and NC test were painful. Now, after reading through some of the messages I am quite nervous about having this done. Wish me luck! and pray for good results! Cathy ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 In a message dated 6/16/2000 9:16:59 AM Pacific Daylight Time, lcconley@... writes: << Wish me luck! and pray for good results! Cathy >> HI Cathy, how old are you? At what age did your Mom and Gma have trouble with their CMT. I hope that you don't experiance any pain from the testing. Many people do not think of it as painful. Your new Friend Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 In a message dated 6/16/2000 9:16:59 AM Pacific Daylight Time, lcconley@... writes: << Wish me luck! and pray for good results! Cathy >> HI Cathy, how old are you? At what age did your Mom and Gma have trouble with their CMT. I hope that you don't experiance any pain from the testing. Many people do not think of it as painful. Your new Friend Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2000 Report Share Posted June 16, 2000 In a message dated 6/16/2000 9:16:59 AM Pacific Daylight Time, lcconley@... writes: << Wish me luck! and pray for good results! Cathy >> HI Cathy, how old are you? At what age did your Mom and Gma have trouble with their CMT. I hope that you don't experiance any pain from the testing. Many people do not think of it as painful. Your new Friend Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2000 Report Share Posted November 30, 2000 WElcome Stacey and you are doing great with the group. You should get the hang of it really quickly. You will like this group and congrats on the birth of your son. hugs, Mommy to 1/2/94, 3/15/95, Austin 4/21/98 and 8/15/99 check out our homepage at http://www.geocities.com/melmonette_28 or 's personal webpage at http://www.theparentclub.com/websites/family/melmonette28 -----Original Message-----From: STA-FLO@... Sent: Thursday, November 30, 2000 4:26 PMTo: breastfeeding (AT) eSubject: New to groupHi my name is Stacey. I have a 4 year old girl and a 6 month old boy. I live in New Mexico.I breastfeed my little boy. I don't really understand how to use thisegroups stuff so I hope I am doing this right:) Give the Gift of Life Breastfeed!http://www.lactivist.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Hi Pat! My Name is Rose. Welcome! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Hi Pat! My Name is Rose. Welcome! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Pat: Welcome to the list. We are a very wordy group but you are right that the chat rooms are very lightly utilized, especially the Yahoo ones. There are specific chats on Thursday and Sunday evenings, at 6:00 PM Pacific Time. They are held on the www.duodenalswitch.com chat room which seems to operate more smoothly than the Yahoo ones. There is also a Monday night chat on Talk City that is WEB TV compatible. Apparently others are not. All of these are announced ahead of time here on the list. Again, welcome to the list. I really feel that you are doing the right thing in reversing to a DS. I shudder when I hear of people switching from a VBG to an RNY when there is still a higher chance for failure than there is with the DS. Regards. Joe Frost, old gentleman, not old fartSan , TX, 60 years oldSurgery 11/29/00 by Dr. Welker Lateral Gastrectomy with Duodenal Switch340 starting weight, currently 244http://www.duodenalswitch.com/Patients/Joe/joe.html New to Group > Hi, my name is pat, male, 51 years. I had a previous VBG in 1988 and > started having problems and had it reversed last year but could't > keep the weight off. I am now approved for DS and scheduled 6/12/01. > I have noticed that there is never anyone in the chatroom on the DS > sites. Obesityhelp.com is very busy but not too many DS's there. I > live in WA. Dr. Heap is my doc. Will be looking forward to > communicating with everyone.> > Thanks,> Pat > > > > > > > ----------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Pat: Welcome to the list. We are a very wordy group but you are right that the chat rooms are very lightly utilized, especially the Yahoo ones. There are specific chats on Thursday and Sunday evenings, at 6:00 PM Pacific Time. They are held on the www.duodenalswitch.com chat room which seems to operate more smoothly than the Yahoo ones. There is also a Monday night chat on Talk City that is WEB TV compatible. Apparently others are not. All of these are announced ahead of time here on the list. Again, welcome to the list. I really feel that you are doing the right thing in reversing to a DS. I shudder when I hear of people switching from a VBG to an RNY when there is still a higher chance for failure than there is with the DS. Regards. Joe Frost, old gentleman, not old fartSan , TX, 60 years oldSurgery 11/29/00 by Dr. Welker Lateral Gastrectomy with Duodenal Switch340 starting weight, currently 244http://www.duodenalswitch.com/Patients/Joe/joe.html New to Group > Hi, my name is pat, male, 51 years. I had a previous VBG in 1988 and > started having problems and had it reversed last year but could't > keep the weight off. I am now approved for DS and scheduled 6/12/01. > I have noticed that there is never anyone in the chatroom on the DS > sites. Obesityhelp.com is very busy but not too many DS's there. I > live in WA. Dr. Heap is my doc. Will be looking forward to > communicating with everyone.> > Thanks,> Pat > > > > > > > ----------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Pat: Welcome to the list. We are a very wordy group but you are right that the chat rooms are very lightly utilized, especially the Yahoo ones. There are specific chats on Thursday and Sunday evenings, at 6:00 PM Pacific Time. They are held on the www.duodenalswitch.com chat room which seems to operate more smoothly than the Yahoo ones. There is also a Monday night chat on Talk City that is WEB TV compatible. Apparently others are not. All of these are announced ahead of time here on the list. Again, welcome to the list. I really feel that you are doing the right thing in reversing to a DS. I shudder when I hear of people switching from a VBG to an RNY when there is still a higher chance for failure than there is with the DS. Regards. Joe Frost, old gentleman, not old fartSan , TX, 60 years oldSurgery 11/29/00 by Dr. Welker Lateral Gastrectomy with Duodenal Switch340 starting weight, currently 244http://www.duodenalswitch.com/Patients/Joe/joe.html New to Group > Hi, my name is pat, male, 51 years. I had a previous VBG in 1988 and > started having problems and had it reversed last year but could't > keep the weight off. I am now approved for DS and scheduled 6/12/01. > I have noticed that there is never anyone in the chatroom on the DS > sites. Obesityhelp.com is very busy but not too many DS's there. I > live in WA. Dr. Heap is my doc. Will be looking forward to > communicating with everyone.> > Thanks,> Pat > > > > > > > ----------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2001 Report Share Posted May 10, 2001 Pat, Clear the decks; this is one heck of a chat room! Welcome aboard! Marcia > New to Group > > > Hi, my name is pat, male, 51 years. I had a previous VBG in 1988 and > started having problems and had it reversed last year but could't > keep the weight off. I am now approved for DS and scheduled 6/12/01. > I have noticed that there is never anyone in the chatroom on the DS > sites. Obesityhelp.com is very busy but not too many DS's there. I > live in WA. Dr. Heap is my doc. Will be looking forward to > communicating with everyone. > > Thanks, > Pat > > > > > > > ---------------------------------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
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