Guest guest Posted May 5, 2000 Report Share Posted May 5, 2000 Neurologist have found that the drug ropinirole is a safe and effective treatment for restless legs syndrome go to http://www.pslgroup.com/dg/1cf0a6.htm to read about it. >Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2000 Report Share Posted May 6, 2000 Does Restless Leg Syndrome coincide with CMT? When we first saw the neurologist for 's CMT we asked if he had any ideas for our sleeping arrangements, as I kick and toss so much in my sleep that can't sleep in the same bed (I kick his aching legs and feet - bad me!). The neurologist said I probably had RLS, but I haven't really had it formally checked out yet. can toss a bit on his own, so I think that would be a yucky coincidence, if we both had it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2000 Report Share Posted May 6, 2000 In a message dated 5/5/00 8:14:36 PM, Vivien529@... writes: << Does Restless Leg Syndrome coincide with CMT? >> CMTers may have Restless Leg Syndrome, but people with Restless Leg Syndrome usually do NOT have CMT. Clear? Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 In a message dated 7/21/00 3:10:00 PM Pacific Daylight Time, cmontana@... writes: > My grandmother (questionable CMT), my mother (CMT II) > and I (CMT II) have all had RLS all our lives. Mine usually comes on > when I'm tired and if I take a couple Tylenol and a nap, it will go > away. ***************** Carolyn, I also suffer with restless leg syndrome... I think Kat was just saying that CMT and Restless Leg usually don't go hand in hand..... My Restless Leg gets worse if I take anything with Benadryl in it.... Makes it mighty hard to take an over the counter sleep-aid... LOL Jeanie <A HREF= " Moonglow21@... " >Moonglow21@...</A> or <A HREF= " Jeanie421@... " >Jeanie421@...</A> come and check out Charcot-Marie-Toothonlinechat at <A HREF= " Charcot-Marie-Toothonlinechat " >http://www.e groups.com/group/Charcot-Marie-Toothonlinechat</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 In a message dated 7/21/00 3:10:13 PM, I said: << CMTers may have Restless Leg Syndrome, but people with Restless Leg Syndrome usually do NOT have CMT. >> That was in response to a question that asked if one has Restless Leg Syndrome does that mean the person has CMT. I know that many CMTers DO have RLS, but many people with RLS do NOT have CMT. Having one does not mean having the other. I was answering that, or trying to. There are very few people with CMT compared with the number of people who have RLS, but many CMTers do have RLS. I hope this helps. Sorry I wasn't clear. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 I was just wondering what the definition of Restless leg syndrome is....is that cramping of the leg?....I get terrible cramps in my feet and calves and it usually takes place during the night and will usually last throughout the night. I have CMT1X and have no noticeable signs of the disease at this point...although I have a 3 yr old son who is already in need of leg braces, he has not at this point shown any signs of leg cramping. I have had leg cramping my entire life....just curious as to the correlation of it all. Thank You, Tana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 In a message dated 7/21/00 5:30:40 PM Pacific Daylight Time, ann9055@... writes: > I was just wondering what the definition of Restless leg syndrome is....is > that cramping of the leg?... Tana, when I have restless leg this is what happens.... If I try to lay down in bed and lay still - I can't - I will have to move my legs. They start to ache and the only thing that seems to help is if you move your legs constantly. Thus the name RESTLESS. The cramping is different. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 In a message dated 7/21/00 5:30:38 PM, ann9055@... writes: << I was just wondering what the definition of Restless leg syndrome is. >> Information for Patients If you, a member of your family, or someone you care about is affected by Restless Legs Syndrome (RLS), please read this section. You will find information about the primary features of RLS, its potential causes, and today's most effective treatment options. This site also includes a glossary of RLS terms and FAQ area. Click here for the transcript of the RLS Web chat, which was in conjunction with WE MOVE and the Restless Legs Syndrome Foundation at the BetterHealth site on America Online. This information is provided for educational purposes and is not meant to take the place of consultation with your physician. Please contact your medical professional if you have any questions about RLS or its treatment. What is restless legs syndrome? Restless legs syndrome (RLS) is a neurologic movement disorder characterized by sensory and motor abnormalities that are distinctive but frequently misdiagnosed. Some reports indicate that an accurate diagnosis takes a mean of two years after patients initially seek medical advice regarding their symptoms. RLS may affect up to 12 million people in the United States. What are the symptoms of restless legs syndrome? In 1995, the International Restless Legs Syndrome Study Group, then comprising 28 investigators from seven countries, defined the four primary features of RLS. 1. The desire to move the legs in association with unusual or uncomfortable sensations (paresthesias/dysesthesias) deep within the legs, usually in the calves; in some cases, the arms may also be affected. These sensations are described as creeping, burning, tingling, cramping, aching, itching, pulling, crawling, or " water flowing " deep within the affected extremities. Patients with mild or moderate RLS characterize these sensations as uncomfortable; for the most part, they are not perceived as painful. In rare cases, unusual sensations occur in the feet. In even rarer cases, these sensations may also be present in the trunk or genital area. These feelings may move from one part of the body to another or may affect only one side of the body (asymmetric). For example, one leg may have unusual sensations whereas the other does not. 2. Motor restlessness in response to or in an effort to relieve unusual sensations or discomfort. To the extent that a patient feels a compelling urge to move, these movements may be termed involuntary; however, in so far as a patient chooses which type of movement to perform, these movements are voluntary. Such movements are often repetitive and may include pacing, rocking, shaking, tossing and turning in bed, stretching, bending, marching in place, or engaging in certain repetitive exercises, such as riding an exercise bike or walking on a treadmill. Many individuals develop their own routine of stereotypical movements and tend to repeat these same movements in response to uncomfortable sensations. 3. Symptoms become obvious or worse while at rest (during periods of inactivity or relaxation) and may be temporarily diminished by voluntary movements of the affected limb(s). This restlessness is sometimes mistaken as " fidgetiness " or " nervousness. " The unusual sensations and motor restlessness associated with RLS may also be provoked by prolonged periods of inactivity such as occurs during travel in a plane, train, or car. 4. Symptoms occur most frequently during the evening or the early part of the night (e.g., between 6 p.m. and 4 a.m.). Individuals with even the most severe RLS symptoms typically obtain some measure of relief during the early morning hours. Worsening of symptoms while at rest and at nighttime may be a very distinctive pattern that is unique to restless legs syndrome. Additional Findings Associated with Restless Legs Syndrome * What Causes Restless Legs Syndrome? * What is Happening to Produce RLS Symptoms? * How is Restless Legs Syndrome Diagnosed? * Restless Legs Syndrome Treatments * Restless Legs Syndrome FAQ http://www.wemove.org/rls_pat.html http://www.wemove.org/rls_mtr.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 Thank-you so much for the information, It answered alot of particular questions I had. My Mother, whom also has CMT and I discussed this article, and for the first time in years, both Mom and I know what we have and that others are out there. I asked my hand surgeon about the " crawly things feeling " , and he told me a totally differnt explaination. Nice to know the truth. Again, thank-you, Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 Carolyn, Lamar here, She was correct. Most with RLS or PLMS do not have CMT Some with RLS or PLMS do have CMT Some with CMT do not have RLS or PLMS Many with CMT have RLS or PLMS (though I know of no studies on the percentages, many have said they do have it, and it seems that the incidence MAY be higher than in the general population) ----- Original Message ----- From: cmontana@... egroups Sent: Friday, July 21, 2000 6:08 PM Subject: [] Re: Restless leg syndrome Hi, Kat. This is a reply to an older message (#2605) about restless leg syndrome. You said " people with Restless Leg Syndrome usually do NOT have CMT. " My grandmother (questionable CMT), my mother (CMT II) and I (CMT II) have all had RLS all our lives. Mine usually comes on when I'm tired and if I take a couple Tylenol and a nap, it will go away. Mother often has RLS for no discernable reason, most anytime of the day, even in her sleep. Don't know if it is caused or exacerbated by CMT, but we've got it - big time! Carolyn > > In a message dated 5/5/00 8:14:36 PM, Vivien529@a... writes: > > << Does Restless Leg Syndrome coincide with CMT? >> > > CMTers may have Restless Leg Syndrome, but people with Restless Leg Syndrome > usually do NOT have CMT. > > Clear? > > Kat ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 Hi, Kat. This is a reply to an older message (#2605) about restless leg syndrome. You said " people with Restless Leg Syndrome usually do NOT have CMT. " My grandmother (questionable CMT), my mother (CMT II) and I (CMT II) have all had RLS all our lives. Mine usually comes on when I'm tired and if I take a couple Tylenol and a nap, it will go away. Mother often has RLS for no discernable reason, most anytime of the day, even in her sleep. Don't know if it is caused or exacerbated by CMT, but we've got it - big time! Carolyn > > In a message dated 5/5/00 8:14:36 PM, Vivien529@a... writes: > > << Does Restless Leg Syndrome coincide with CMT? >> > > CMTers may have Restless Leg Syndrome, but people with Restless Leg Syndrome > usually do NOT have CMT. > > Clear? > > Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Hi, Tana ... I get terrible cramps in my feet ... my toes are almost always cramping ... especially if I do much walking during the day. And now, I am getting periodic cramps in my upper legs at night which wake me up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Yep ... I get that too ... wierd feeling, isn't it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 My understanding is that RLS is more involuntary spasms that can be irritating to downright painful, at least that's the way it is in my family. We always called them the " Leg Jerks " because that's what happens. Not very scientific, but you get the idea. I don't know if others experience cramping. That's not what happens with us. Carolyn > I was just wondering what the definition of Restless leg syndrome is....is > that cramping of the leg?....I get terrible cramps in my feet and calves and > it usually takes place during the night and will usually last throughout the > night. I have CMT1X and have no noticeable signs of the disease at this > point...although I have a 3 yr old son who is already in need of leg braces, > he has not at this point shown any signs of leg cramping. I have had leg > cramping my entire life....just curious as to the correlation of it all. > > Thank You, > Tana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 , about your toes cramping. When mine do that I found that it helps to pull on my toes. Pull up and out. It might be uncomfortable, but it will release the cramps in the toes and should allow them to not feel so tight. My hubby was reading a massage book and read this and tried it on me and it worked. I was very very thankfull. I hope it works for you. Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Hey, thanks for the tip, Jeanie ... I'll try it tonight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Again, you're not on your own. Sometimes I sit there and my legs have to move, stretching etc and I have CMTII as well. Interesting Sue ----- Original Message ----- From: cmontana@... egroups Sent: Friday, July 21, 2000 11:08 PM Subject: [] Re: Restless leg syndrome Hi, Kat. This is a reply to an older message (#2605) about restless leg syndrome. You said " people with Restless Leg Syndrome usually do NOT have CMT. " My grandmother (questionable CMT), my mother (CMT II) and I (CMT II) have all had RLS all our lives. Mine usually comes on when I'm tired and if I take a couple Tylenol and a nap, it will go away. Mother often has RLS for no discernable reason, most anytime of the day, even in her sleep. Don't know if it is caused or exacerbated by CMT, but we've got it - big time! Carolyn > > In a message dated 5/5/00 8:14:36 PM, Vivien529@a... writes: > > << Does Restless Leg Syndrome coincide with CMT? >> > > CMTers may have Restless Leg Syndrome, but people with Restless Leg Syndrome > usually do NOT have CMT. > > Clear? > > Kat -------------------------------------------------------------------------------- -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Sometimes though the drugs you're taking can make you sweat profusely. Amitryptiline (Is that how you spell it?) did it for me at night Sue ----- Original Message ----- From: oregonpapa@... egroups Sent: Saturday, July 22, 2000 5:25 AM Subject: Re: [] Restless leg syndrome Yep ... I get that too ... wierd feeling, isn't it? -------------------------------------------------------------------------------- -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 , My toes curl specially on my left foot. During the day I have a soft sponge comb. Kind of like the ones that people use to paint their toenails. It keeps my toes streight, and they don't cramp. My hubby knows where to get these. He is not home now. If you are interested, I will ask him. How is Ella? oregonpapa@... wrote: Hey, thanks for the tip, Jeanie ... I'll try it tonight. --------------------------------- --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Hi ... I'm interested ... I don't understand exactly what you mean, though ... My left toes curl like that too ... in fact, its the left foot that gives me the most trouble with pain and everything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 And I can supply the paint Sue ----- Original Message ----- From: Martha Kamens egroups Sent: Saturday, July 22, 2000 8:40 PM Subject: Re: [] Restless leg syndrome , My toes curl specially on my left foot. During the day I have a soft sponge comb. Kind of like the ones that people use to paint their toenails. It keeps my toes streight, and they don't cramp. My hubby knows where to get these. He is not home now. If you are interested, I will ask him. How is Ella? oregonpapa@... wrote: Hey, thanks for the tip, Jeanie ... I'll try it tonight. --------------------------------- --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 In a message dated 7/21/2000 7:36:15 PM US Eastern Standard Time, Moonglow21@... writes: << Tana, when I have restless leg this is what happens.... If I try to lay down in bed and lay still - I can't - I will have to move my legs. They start to ache and the only thing that seems to help is if you move your legs constantly. Thus the name RESTLESS. The cramping is different. Jeanie >> Jeanie, I've been reading the emails on this and was also curious about Restless Leg.....I also have this. You described it perfectly. I had always thought it went along with CMT 2. Thanks for opening my eyes. fom IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 I have a terrible time sleeping my neauro had me do a sleep test in hospital.It turns out my legs flop all night & I wasn't aware of it that's why I wake up so much he said its not RL I can't remember what he called it . I also have terrible leg cramps at night my husband who is a sound sleeper saw my legs one night said it was like I was ridding a bike,I also wake up very tired. ;) flyingk@... wrote: > In a message dated 7/21/2000 7:36:15 PM US Eastern Standard Time, > Moonglow21@... writes: > > << Tana, when I have restless leg this is what happens.... If I try to lay > down > in bed and lay still - I can't - I will have to move my legs. They start to > ache and the only thing that seems to help is if you move your legs > constantly. Thus the name RESTLESS. > The cramping is different. > > Jeanie >> > > Jeanie, > I've been reading the emails on this and was also curious about Restless > Leg.....I also have this. You described it perfectly. I had always thought it > went along with CMT 2. Thanks for opening my eyes. > > fom > IN > > ------------------------------------------------------------------------ > Life's too short to send boring email. Let SuperSig come to the rescue. > 1/6809/13/_/616793/_/964357559/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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