Last year I wrote volumes. This year? I have very little information. They seemed to "dumb" down the info this year and repeated much of what was said the last couple years. Probably to help all the newbies. However, those of us who'd been there before didn't get much new info.
I did learn a few things so will endeavor to include them in these thread.
At the conference
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ViewsAskew
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At the conference
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
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ViewsAskew
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Treatment
Highlights from this presentation:
The basic difference between a disease and a syndrome: a disease is based on pathology - something the doctor can see, often through test results. A syndrome is based on symptoms - things you feel that you describe to a doc - but that he/she can't see or test. As of now, RLS is actually straddling the line as the docs can now see results in the brain showing differences.
If you fly to a new time zone, since RLS is based on a circadian rhythm, your symptoms will occur earlier or later until you acclimate.
Alcohol acts as a sedative for 1-2 hours; then it converts chemically and it can awaken you. So, don't use it to try to sleep!
In one study of 136 patients taking opioids over a 7 year period, only one in 136 had addiction or tolerance (he didn't specify which or if both).
In another study that reviewed the efficacy of different treatments, levorphenol showed the greatest decrease of RLS symptoms and other opioids were less effective than Mirapex. In order of most to least effectiveness, it was levorphenol, Mirapex, hydromorphone, hydrocodone, and propoxiphene. Propoxiphene was not much more effective than having no treatment at all, with people still having symptoms in the moderate range.
DA's can be used in diagnosis (to me this is controversial - I'd love to hear other doctor's views of this). The take was that because DA's do not help any other condition, and that they help almost all people with RLS, that if a doc is not sure of the diagnosis, then he/she should try a DA. If it doesn't control the RLS, then it probably isn't RLS.
Isolated pain at night - without any urge or diminishing of symptoms with movement - is not RLS.
If there is more of an urge to move issue, the DAs tend to work better than if there is more of a pain issue.
IF RLS is ONLY in the arms, and never in the legs at all, it is not RLS. I assume he would also say that this applies to any body part, but he didn't say this. For him, a diagnosis of RLS requires that RLS is in the legs at least some of the time.
Jiggling legs (called sewing machine legs on our board) is NOT a symptom of RLS, nor indicative of it. My only concern with this blanket statement is that one of the ways my family deals with RLS is to make ourselves to sewing machine legs. The difference, I suppose, is that we do this consciously - not unconsciously. Unconscious movements that show RLS are the twisting of ankles and feet.
Quality of life of those with RLS is as bad or worse than of the QoL of those with many other significant diseases/disorders - such as type II diabetes, depression, etc.
In Europe, there is an interesting north/south distribution of RLS. In Scandinavian countries, the incidence of RLS is as high as 14%. In the Mediterranean, it is about 5%.
In Walter's study, the average to diagnosis was 20 years. Of those who mentioned it to their primary care docs, only 13% received the correct diagnosis immediately. Of the docs that actually wrote in in the charts (info that the patient told them), only 25% diagnosed it.
Only the person with RLS can diagnose it. Not the doc, not a sleep study, etc. It is entirely based on the person's answers to the 4 criteria.
Although the distribution of RLS in women and men is 65/35, if you take out all women who had children, it is closer to 50/50. They do not know why, but think it may have to do with hormones associated with pregnancy. Estradial, a hormone that is high in the last trimester, may be the culprit during pregnancy rather than iron. RLS resolves about the time that the levels of estradial return to normal - at this time iron is actually at its lowest.
They have no idea of why RLS is secondary to any condition. It is "associated" with the condition, not necessarily caused by the condition itself.
Increased dopamine production may be why mental activity (such as when concentrating on something) reduces RLS. When we concentrate, we get bursts of dopamine. However, this is just a hypothesis. They really have few real answers.
In Becker's practice, he used opioids in 24% of his cases due to augmentation or insufficient results with dopaminergics.
Levadopa is great - the best - for intermediate symptoms and as a therapy to assist other drugs when a boost is needed once in a while. No more than 300 mg should be used per week. He didn't say how many days, but I've read in other places not to use it more than 4 days per week.
The basic difference between a disease and a syndrome: a disease is based on pathology - something the doctor can see, often through test results. A syndrome is based on symptoms - things you feel that you describe to a doc - but that he/she can't see or test. As of now, RLS is actually straddling the line as the docs can now see results in the brain showing differences.
If you fly to a new time zone, since RLS is based on a circadian rhythm, your symptoms will occur earlier or later until you acclimate.
Alcohol acts as a sedative for 1-2 hours; then it converts chemically and it can awaken you. So, don't use it to try to sleep!
In one study of 136 patients taking opioids over a 7 year period, only one in 136 had addiction or tolerance (he didn't specify which or if both).
In another study that reviewed the efficacy of different treatments, levorphenol showed the greatest decrease of RLS symptoms and other opioids were less effective than Mirapex. In order of most to least effectiveness, it was levorphenol, Mirapex, hydromorphone, hydrocodone, and propoxiphene. Propoxiphene was not much more effective than having no treatment at all, with people still having symptoms in the moderate range.
DA's can be used in diagnosis (to me this is controversial - I'd love to hear other doctor's views of this). The take was that because DA's do not help any other condition, and that they help almost all people with RLS, that if a doc is not sure of the diagnosis, then he/she should try a DA. If it doesn't control the RLS, then it probably isn't RLS.
Isolated pain at night - without any urge or diminishing of symptoms with movement - is not RLS.
If there is more of an urge to move issue, the DAs tend to work better than if there is more of a pain issue.
IF RLS is ONLY in the arms, and never in the legs at all, it is not RLS. I assume he would also say that this applies to any body part, but he didn't say this. For him, a diagnosis of RLS requires that RLS is in the legs at least some of the time.
Jiggling legs (called sewing machine legs on our board) is NOT a symptom of RLS, nor indicative of it. My only concern with this blanket statement is that one of the ways my family deals with RLS is to make ourselves to sewing machine legs. The difference, I suppose, is that we do this consciously - not unconsciously. Unconscious movements that show RLS are the twisting of ankles and feet.
Quality of life of those with RLS is as bad or worse than of the QoL of those with many other significant diseases/disorders - such as type II diabetes, depression, etc.
In Europe, there is an interesting north/south distribution of RLS. In Scandinavian countries, the incidence of RLS is as high as 14%. In the Mediterranean, it is about 5%.
In Walter's study, the average to diagnosis was 20 years. Of those who mentioned it to their primary care docs, only 13% received the correct diagnosis immediately. Of the docs that actually wrote in in the charts (info that the patient told them), only 25% diagnosed it.
Only the person with RLS can diagnose it. Not the doc, not a sleep study, etc. It is entirely based on the person's answers to the 4 criteria.
Although the distribution of RLS in women and men is 65/35, if you take out all women who had children, it is closer to 50/50. They do not know why, but think it may have to do with hormones associated with pregnancy. Estradial, a hormone that is high in the last trimester, may be the culprit during pregnancy rather than iron. RLS resolves about the time that the levels of estradial return to normal - at this time iron is actually at its lowest.
They have no idea of why RLS is secondary to any condition. It is "associated" with the condition, not necessarily caused by the condition itself.
Increased dopamine production may be why mental activity (such as when concentrating on something) reduces RLS. When we concentrate, we get bursts of dopamine. However, this is just a hypothesis. They really have few real answers.
In Becker's practice, he used opioids in 24% of his cases due to augmentation or insufficient results with dopaminergics.
Levadopa is great - the best - for intermediate symptoms and as a therapy to assist other drugs when a boost is needed once in a while. No more than 300 mg should be used per week. He didn't say how many days, but I've read in other places not to use it more than 4 days per week.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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cornelia
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ViewsAskew
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My first post was from the presentation on treatments. This post is just about a study they did recently. It is referred to as the REST study.
They asked people with RLS to describe their experiences regarding diagnosis. Then, they reviewed the actual records to see what the doctor wrote.
357 of 551 patients (64.8%) with RLS reported RLS to their physician. 46 of the 357 received a diagnosis of RLS (only 12.9%). That is amazing. This illustrates how important it is to educate our physicians. We all can play a role in this. The more we work to educate our docs - the more we help everyone else.
In many of these cases, the doctors did not write ANY notes in the chart about the patients symptoms! In cases where the doc listened enough to write about it, the rate of diagnosis went up. . .to 24.9%. Unbelievable. Here are doctors actually writing in the chart, but didn't know RLS well enough to do anything about it.
According to a different study, 59% of patients were undiagnosed or misdiagnosed. The primary misdiagnosis was anxiety. In this study, Walters found 18 years between symptom onset and correct diagnosis.
In the REST study, there were 23052 participants in 5 countries - 4 in Europe and the US.
Country Any RLS Weekly RLS
UK 14.2% 11.3%
USA 13.3 11.3
Germany 11.4 7.9
France 7.4 5.0
Spain 5.5 3.6
Total 9.6 7.1
In another discussion, Dr Allen said that 1% judge their RLS to be very severe and that the the effects is as bad as any other disease. Interesting was that we actually know more about the pathology of RLS than we do depression, yet doctors do not know anything about this.
Dr Allen asked all of us to help resolve this. He asked us all to write our Congressperson regarding the NIH and ask them to support RLS funding. He also asked us to all respond to the articles that denigrate RLS. If we are all silent, we cannot expect anything to change. I know that many of us here have done that. I'd urge anyone who hasn't to please do so. I still see articles on "disease mongering" from time to time. I have written a letter everytime I see something. I have written the people who wrote the original study. Please keep in mind that ranting and raving may not help us all that much, however much we'd prefer to do it
. Using the facts from the REST study may be a good start.
They asked people with RLS to describe their experiences regarding diagnosis. Then, they reviewed the actual records to see what the doctor wrote.
357 of 551 patients (64.8%) with RLS reported RLS to their physician. 46 of the 357 received a diagnosis of RLS (only 12.9%). That is amazing. This illustrates how important it is to educate our physicians. We all can play a role in this. The more we work to educate our docs - the more we help everyone else.
In many of these cases, the doctors did not write ANY notes in the chart about the patients symptoms! In cases where the doc listened enough to write about it, the rate of diagnosis went up. . .to 24.9%. Unbelievable. Here are doctors actually writing in the chart, but didn't know RLS well enough to do anything about it.
According to a different study, 59% of patients were undiagnosed or misdiagnosed. The primary misdiagnosis was anxiety. In this study, Walters found 18 years between symptom onset and correct diagnosis.
In the REST study, there were 23052 participants in 5 countries - 4 in Europe and the US.
Country Any RLS Weekly RLS
UK 14.2% 11.3%
USA 13.3 11.3
Germany 11.4 7.9
France 7.4 5.0
Spain 5.5 3.6
Total 9.6 7.1
In another discussion, Dr Allen said that 1% judge their RLS to be very severe and that the the effects is as bad as any other disease. Interesting was that we actually know more about the pathology of RLS than we do depression, yet doctors do not know anything about this.
Dr Allen asked all of us to help resolve this. He asked us all to write our Congressperson regarding the NIH and ask them to support RLS funding. He also asked us to all respond to the articles that denigrate RLS. If we are all silent, we cannot expect anything to change. I know that many of us here have done that. I'd urge anyone who hasn't to please do so. I still see articles on "disease mongering" from time to time. I have written a letter everytime I see something. I have written the people who wrote the original study. Please keep in mind that ranting and raving may not help us all that much, however much we'd prefer to do it
. Using the facts from the REST study may be a good start.Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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ViewsAskew
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Dr Earley - Pathophysiology
Not much new here - same stuff from prior presentations. Iron doesn't move correctly in the brain, we don't have enough transferrin receptors, etc.
His recommendation was ferritin of at least 60 mcg/l. He did stress NOT to take iron without having a ferritin test. His recommendations on taking iron were no different than what we know (and is written other places on this board).
His recommendation was ferritin of at least 60 mcg/l. He did stress NOT to take iron without having a ferritin test. His recommendations on taking iron were no different than what we know (and is written other places on this board).
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
ViewsAskew wrote: I still see articles on "disease mongering" from time to time. I have written a letter everytime I see something. Please keep in mind that ranting and raving may not help us all that much, however much we'd prefer to do it
Excellent points! I would guess the Mayo Algorithm is also a good resource to offer reporters since Mayo is so respected.
Anyone know of an article that gives false-truths about RLS? I would think a forum thread started with the address or email address of the writer would be nice to have. A kind and loving education via email/mail might cause the writer to do a follow up story showing enlightened viewpoints.
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ViewsAskew
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Dr Rye - ongoing studies
A section is now associated with RLS on chromosomes 12q, 14q, 9p, 2q, and 20P. 12q is shown in four different studies. What is new is that this is a recessive pattern, not dominant. How can something be this prevalent and be recessive pattern of inheritance? Well, he believes that 1 in 4 of us have one of the RLS genes (they believe there are several). Since so many of us carry one or more copies, it's just so easy to marry someone else with copies.
PLM IS associated with this. In his genetic studies, some families with RLS would have offspring with only RLS, only PLM, or both. PLM seems to be a strong genetic marker for finding the location of the gene.
PLM IS associated with this. In his genetic studies, some families with RLS would have offspring with only RLS, only PLM, or both. PLM seems to be a strong genetic marker for finding the location of the gene.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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ViewsAskew
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If you go back and look at the original posts, you'll find the information - sorry, but I don't know exactly where it is. We posted the names of the authors and links to some of the articles, too.
If you sign up for a Google or Yahoo notification about RLS, they will send you an email everytime they find something published about RLS. I get articles daily. While the traffic has subsided, I've seen three or four about mongering in the past two weeks.
If you sign up for a Google or Yahoo notification about RLS, they will send you an email everytime they find something published about RLS. I get articles daily. While the traffic has subsided, I've seen three or four about mongering in the past two weeks.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Rubyslipper
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Ann, you have done a great job of getting the medical info out to everyone. By the way, Ann did a program at the conference on RLS and Relationships and it was great. We did a round-table discussion with lots of good ideas from Ann. I just wanted to say that there is talk of doing National Patient Meetings every other year. It's just so expensive for anyone to go and for the Foundation to cover. They might do regional meetings on the off years instead which would be closer for most of us and cheaper to attend. Probably only be a one day workshop. What do you all think about that? Do you have any other ideas that would draw people to meetings? San Antonio was a wonderful place to have a meeting but it was really expensive to go.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
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ViewsAskew
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Regional meetings may make much more sense, Ruby. Good idea - glad they have you working with them.
It seems that one of the most difficult problems is getting non-members there. If 1 in 10 of us has RLS, and 1 percent had severe RLS, that's a lot of people that could attend. But without correct diagnosis and without all these people being members of the Foundation, you have a small audience. Most of the people who go are the ones that are not getting the help they need = the rest of us have little reason to go. Maybe you could talk to a group of people who have their RLS under control and find out what would interest them. They are the vast majority of us, but not most of the ones you'll find on these boards.
It seems that one of the most difficult problems is getting non-members there. If 1 in 10 of us has RLS, and 1 percent had severe RLS, that's a lot of people that could attend. But without correct diagnosis and without all these people being members of the Foundation, you have a small audience. Most of the people who go are the ones that are not getting the help they need = the rest of us have little reason to go. Maybe you could talk to a group of people who have their RLS under control and find out what would interest them. They are the vast majority of us, but not most of the ones you'll find on these boards.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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ViewsAskew
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Re: Dr Rye - ongoing studies
ViewsAskew wrote:A section is now associated with RLS on chromosomes 12q, 14q, 9p, 2q, and 20P. 12q is shown in four different studies. What is new is that this is a recessive pattern, not dominant. How can something be this prevalent and be recessive pattern of inheritance? Well, he believes that 1 in 4 of us have one of the RLS genes (they believe there are several). Since so many of us carry one or more copies, it's just so easy to marry someone else with copies.
PLM IS associated with this. In his genetic studies, some families with RLS would have offspring with only RLS, only PLM, or both. PLM seems to be a strong genetic marker for finding the location of the gene.
I was searching for info regarding the genetic characteristics.
I think that the above post about what Dr Rye said would tend to show that it can come from either parent as he said that we can marry someone with copies and we'd get duplicate ones.
I'll keep searching for more.
Oh, and reading through the above post helped me realize how important these meetings are for all of us to get an idea of what's happening, rather than trying to trudge through journals. Thanks, again, RLS Foundation, for what you do to help us all get the info we need.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.