I don't want ANY pharmaceutical companies involved in the teaching or training of RLS.
We already have a big credability problem, but once they started advertising for Requip and Mirapex, it got worse and most people began to hear and some believe, that RLS was invented by the pharmaceutical industry to sell pills people don't need.
The problem with doctors
Zach,
I get your idea about distancing ourselves from the pharma industry, but the fact remains that without this industry, none of the meds we currently use to treat RLS would exist.
I understand your disappointment with the negative response of some individuals who believe that the pharmaceutical companies 'created' RLS to promote their medications. But on the other hand, there are many more people who, because of the RLS and Mirapex ads, have become aware that RLS truly exists, that a need for treatment options also exists, and that physicians now can prescribe FDA approved meds for treatment.
Forget Rosie OD's ignorance of RLS...she's not representative of all the people who watch or listen to these ads.
Are the pharma companies altruistically presenting products to help mankind? Probably not. $$$ is what motivates them, it always has, and I really don't feel that we need to focus on that. If only we can use their marketing efforts to help us with our objectives...that's what I'm getting at.
The reality is that if we want to educate doctors, we need a forum within which this can be done. Money is needed to accomplish this, and to garner attendance by those physicians. If we don't have the financial resources, then we need to look creatively at ways to get our goals met using the money of other organizations or corporate entities.
If I go to the Auto Show, I'll see representatives from Ford, Chrysler, General Motors, and many others...all of these representatives are going to be promoting their products. Why else would they be there? Yet how many of us have attended these and similar events (boat shows, RV shows, etc.) and in the process we acquired knowledge about many related topics and about how to use the displayed products in our own lives?
It's really not much different here. Look, I don't profess to be a corporate guru or anything, and many of my ideas might not be realistic. But I'm just tossing out ideas that maybe could be incorporated into a larger plan.
If not using pharmaceutical companies, maybe medical groups prepared to offer potential treatment of RLS, (and thereby increasing their patient base) would be interested in participating in (and perhaps help sponsor) an educational event.
I agree with mackjergens that the medical schools should bear the responsibility for educating future doctors about RLS and its treatment. But most of us rely on the knowledge/ability of doctors who've already completed their formal education and residency requirements, and have been in practice for a while.
I fear that I'm beginning to ramble, so I'll stop here.
Hope you all have a great day.
---Andy
I
I get your idea about distancing ourselves from the pharma industry, but the fact remains that without this industry, none of the meds we currently use to treat RLS would exist.
I understand your disappointment with the negative response of some individuals who believe that the pharmaceutical companies 'created' RLS to promote their medications. But on the other hand, there are many more people who, because of the RLS and Mirapex ads, have become aware that RLS truly exists, that a need for treatment options also exists, and that physicians now can prescribe FDA approved meds for treatment.
Forget Rosie OD's ignorance of RLS...she's not representative of all the people who watch or listen to these ads.
Are the pharma companies altruistically presenting products to help mankind? Probably not. $$$ is what motivates them, it always has, and I really don't feel that we need to focus on that. If only we can use their marketing efforts to help us with our objectives...that's what I'm getting at.
The reality is that if we want to educate doctors, we need a forum within which this can be done. Money is needed to accomplish this, and to garner attendance by those physicians. If we don't have the financial resources, then we need to look creatively at ways to get our goals met using the money of other organizations or corporate entities.
If I go to the Auto Show, I'll see representatives from Ford, Chrysler, General Motors, and many others...all of these representatives are going to be promoting their products. Why else would they be there? Yet how many of us have attended these and similar events (boat shows, RV shows, etc.) and in the process we acquired knowledge about many related topics and about how to use the displayed products in our own lives?
It's really not much different here. Look, I don't profess to be a corporate guru or anything, and many of my ideas might not be realistic. But I'm just tossing out ideas that maybe could be incorporated into a larger plan.
If not using pharmaceutical companies, maybe medical groups prepared to offer potential treatment of RLS, (and thereby increasing their patient base) would be interested in participating in (and perhaps help sponsor) an educational event.
I agree with mackjergens that the medical schools should bear the responsibility for educating future doctors about RLS and its treatment. But most of us rely on the knowledge/ability of doctors who've already completed their formal education and residency requirements, and have been in practice for a while.
I fear that I'm beginning to ramble, so I'll stop here.
Hope you all have a great day.
---Andy
I
I don't think they shouldn't be 100% uninvolved, but I think any further involvement would be a detriment to our cause.
They should be free to research and develop drugs, and then advertise those drugs and offer a bit of training.. I just fear a situation where they become the dominant driving force behind medical research and treatments to the point where people don't trust anything they do or say anymore. It's been slowly happening for a while now.. I just don't want it to progress further to the point where they start attacking -us-.
They should be free to research and develop drugs, and then advertise those drugs and offer a bit of training.. I just fear a situation where they become the dominant driving force behind medical research and treatments to the point where people don't trust anything they do or say anymore. It's been slowly happening for a while now.. I just don't want it to progress further to the point where they start attacking -us-.
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ViewsAskew
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Andy, you make many relevant points.
Zach, I couldn't agree more that I don't want them involved in research regarding what causes RLS - that is a self-fulfilling prophecy! The doctors are doing independent research and that is good. The pharmas can move in when the doctors have isolated causes, so that the drugs work on what is causing RLS.
There is no perfect solution here. Capitalism, for better or worse, has certain characteristics. And, one of them is that little gets done by anyone if profit isn't part of it. Education doesn't equal profit for any company, so the only way through is to take donations as the Foundation does.
But, a poster child for another disorder is much more likely to garner empathy and interest, and therefore dollars donated. Who donates to RLS groups? Only people with RLS, is my guess and then only a tiny percentage of them. I bet if we took a poll of the people who use this site and asked how many donated, it was be a very small number. And we're highly impacted!
We're stuck without dollars. The Foundation fights this every day of its existence.
Zach, I couldn't agree more that I don't want them involved in research regarding what causes RLS - that is a self-fulfilling prophecy! The doctors are doing independent research and that is good. The pharmas can move in when the doctors have isolated causes, so that the drugs work on what is causing RLS.
There is no perfect solution here. Capitalism, for better or worse, has certain characteristics. And, one of them is that little gets done by anyone if profit isn't part of it. Education doesn't equal profit for any company, so the only way through is to take donations as the Foundation does.
But, a poster child for another disorder is much more likely to garner empathy and interest, and therefore dollars donated. Who donates to RLS groups? Only people with RLS, is my guess and then only a tiny percentage of them. I bet if we took a poll of the people who use this site and asked how many donated, it was be a very small number. And we're highly impacted!
We're stuck without dollars. The Foundation fights this every day of its existence.
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.
Zach,
I think I'm getting your position...that Pharmaceutical companies could very easily attain a position of undue 'authority' in presenting their products for financial gain, and this in turn could impede our goal of respect and furtherance of education in RLS treatment and research.
And Ann, your points are really valid also. Especially speaking to the issue of the economic realities of our situation, and of the difficulties of stimulating any degree of interest among non-RLSer's.
I think that it's good that we're at least thinking about possible ways to move forward in presenting RLS as a valid serious disease which deserves recognition not only by sufferers and researchers, but by the medical community and general public as well.
Not an easy challenge, but I'm encouraged by mackjergens' comments about his observations of the gradual evolution of RLS into the arena of 'serious' diseases. I guess I and others here are frustrated by the slow pace of this evolution...we need help now, and the thought of tolerating a lifetime of misery is unacceptable to us, on so many levels.
I think my idea about creating an educational 'event' stemmed from my experience working in health information at a VA hospital. In the 1990's, before the VA had electronic medical records, our department was plagued by students and resident doctors who simply could not or would not remove deficiencies in the paper medical records of the time. We were constantly trying just about everything we could to get them to dictate reports, sign notes, etc. within a few days of the discharge of patients from the hospital.
As it turned out, the attempts at intimidation, reprimands, threatened suspensions, etc. just didn't work. What did work was periodically throwing a "let's do our job and complete these charts" party. We provided donuts, beverages, and musical entertainment while the doctors did what they were supposed to do in the first place. Heck, we had patients in wheel chairs coming into the room, wondering what the celebration was about, and asking for food! It's kind of scary to think that some of these doctors may now be treating us!
Maybe, the most cost-containing and effective way to spread the word about RLS is, as someone previously suggested (my mind goes blank yet once more), for us to personally attempt educating our own doctors about RLS and its treatment. Each of us has a unique opportunity to do this during every visit with our doctors.
Not all of us (myself included) will be highly effective in doing this, or for that matter even want to try it...after all, many of us have doctors whose personalities are downright nasty and/or intimidating. But for those of us who are fortunate enough to have doctors receptive to new information and suggestions about our treatment, maybe we can give it a try.
Just think of how far-reaching an influence "converting" just one doctor can have! To all patients who follow us to that doctor, maybe they'll get the treatment that they deserve, without having to fight for it. We never know just how much change we can accomplish with just one single encounter.
What do ya all think? We've got the algorithm, some books, and the support of the foundation and researchers throughout the world. And the only cost associated with this effort will be our willingness to try. I've already done this with my PCP, and I think I noticed the copy of the algorithm in my chart the last time I visited him.
Well, I've got to get going, so I hope that you all have a good night.
---Andy
I think I'm getting your position...that Pharmaceutical companies could very easily attain a position of undue 'authority' in presenting their products for financial gain, and this in turn could impede our goal of respect and furtherance of education in RLS treatment and research.
And Ann, your points are really valid also. Especially speaking to the issue of the economic realities of our situation, and of the difficulties of stimulating any degree of interest among non-RLSer's.
I think that it's good that we're at least thinking about possible ways to move forward in presenting RLS as a valid serious disease which deserves recognition not only by sufferers and researchers, but by the medical community and general public as well.
Not an easy challenge, but I'm encouraged by mackjergens' comments about his observations of the gradual evolution of RLS into the arena of 'serious' diseases. I guess I and others here are frustrated by the slow pace of this evolution...we need help now, and the thought of tolerating a lifetime of misery is unacceptable to us, on so many levels.
I think my idea about creating an educational 'event' stemmed from my experience working in health information at a VA hospital. In the 1990's, before the VA had electronic medical records, our department was plagued by students and resident doctors who simply could not or would not remove deficiencies in the paper medical records of the time. We were constantly trying just about everything we could to get them to dictate reports, sign notes, etc. within a few days of the discharge of patients from the hospital.
As it turned out, the attempts at intimidation, reprimands, threatened suspensions, etc. just didn't work. What did work was periodically throwing a "let's do our job and complete these charts" party. We provided donuts, beverages, and musical entertainment while the doctors did what they were supposed to do in the first place. Heck, we had patients in wheel chairs coming into the room, wondering what the celebration was about, and asking for food! It's kind of scary to think that some of these doctors may now be treating us!
Maybe, the most cost-containing and effective way to spread the word about RLS is, as someone previously suggested (my mind goes blank yet once more), for us to personally attempt educating our own doctors about RLS and its treatment. Each of us has a unique opportunity to do this during every visit with our doctors.
Not all of us (myself included) will be highly effective in doing this, or for that matter even want to try it...after all, many of us have doctors whose personalities are downright nasty and/or intimidating. But for those of us who are fortunate enough to have doctors receptive to new information and suggestions about our treatment, maybe we can give it a try.
Just think of how far-reaching an influence "converting" just one doctor can have! To all patients who follow us to that doctor, maybe they'll get the treatment that they deserve, without having to fight for it. We never know just how much change we can accomplish with just one single encounter.
What do ya all think? We've got the algorithm, some books, and the support of the foundation and researchers throughout the world. And the only cost associated with this effort will be our willingness to try. I've already done this with my PCP, and I think I noticed the copy of the algorithm in my chart the last time I visited him.
Well, I've got to get going, so I hope that you all have a good night.
---Andy
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ViewsAskew
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Andy, I think that the single doctor theory is a great one. It's not the be-all-end-all, but it is amazing how many people can be affected.
The goal, I think, is to get them interested enough to learn more. Many of us get ones that say, well if you know what to so, I'll do it...but that doesn't really help achieve this goal.
I like the idea of creating a starting pack. The Foundation may have such a thing...I have to check. If not, that's a great thing for them to create. It could have a copy of the algorithm, links to important RLS sites, and a synopsis of the most important considerations - differential diagnosis, tests needed, RLS mimics, etc. If we could keep it to 10 pages of less, it wouldn't be intimidating. We could each download one, or pay for a printed copy to be sent to the doctors.
Another opportunity, I think is one that many of us do not participate in. I've always been surprised by how few RLS Group Leaders participate here. RubySlippers, Becat, Dee, occasionally Barb Acosta - but I don't know of others - maybe they do and just haven't said so.
But there are MANY areas where there is NO support group. This offers us a huge opportunity. Here's why:
First, we get to educate those coming the the meetings. This makes sure more of us are educating our doctors.
Second, we get to find RLS experts to come to the meetings a talk. When there isn't an expert, we can use this as the excuse to train them. We could ask a neurologist, a sleep doc and maybe a psychiatrist to agree to become support group doctors. As such, they'd have mandatory training they'd have to go through and an agreement that they might have to sign. The training would include the CMEs that Dr Buchfurer put together plus some advanced training. They would need to agree to come to at least 2 meetings each throughout the year.
Not sure if any of this is in line with what the Foundation requires of the Support Group Leaders...but it's worth exploring.
Each little bit does help. While I would prefer a mass mind-meld whereupon every doctor in the country would be educated, that's not happening. Next would be some educational method where I could reach all these docs. That's not likely, either.
That leaves us doing things like this while we try to work on the rest.
The goal, I think, is to get them interested enough to learn more. Many of us get ones that say, well if you know what to so, I'll do it...but that doesn't really help achieve this goal.
I like the idea of creating a starting pack. The Foundation may have such a thing...I have to check. If not, that's a great thing for them to create. It could have a copy of the algorithm, links to important RLS sites, and a synopsis of the most important considerations - differential diagnosis, tests needed, RLS mimics, etc. If we could keep it to 10 pages of less, it wouldn't be intimidating. We could each download one, or pay for a printed copy to be sent to the doctors.
Another opportunity, I think is one that many of us do not participate in. I've always been surprised by how few RLS Group Leaders participate here. RubySlippers, Becat, Dee, occasionally Barb Acosta - but I don't know of others - maybe they do and just haven't said so.
But there are MANY areas where there is NO support group. This offers us a huge opportunity. Here's why:
First, we get to educate those coming the the meetings. This makes sure more of us are educating our doctors.
Second, we get to find RLS experts to come to the meetings a talk. When there isn't an expert, we can use this as the excuse to train them. We could ask a neurologist, a sleep doc and maybe a psychiatrist to agree to become support group doctors. As such, they'd have mandatory training they'd have to go through and an agreement that they might have to sign. The training would include the CMEs that Dr Buchfurer put together plus some advanced training. They would need to agree to come to at least 2 meetings each throughout the year.
Not sure if any of this is in line with what the Foundation requires of the Support Group Leaders...but it's worth exploring.
Each little bit does help. While I would prefer a mass mind-meld whereupon every doctor in the country would be educated, that's not happening. Next would be some educational method where I could reach all these docs. That's not likely, either.
That leaves us doing things like this while we try to work on the rest.
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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We have another potential option!
While searching about delayed sleep phase, I ended up at the American Academy of Sleep Medicine. They are in a suburb of Chicago. Turns out Dr Picchietti mentioned them in our conversation last week! Amazing.
What he said was not good news, however. He said they didn't really do much about RLS.
So, I think that is a wonderful opportunity. Unfortunately, I can't see what they do provide to doctors, because you have to be a member. And, to be a member requires you to be in the medical field in some way, or a student. I am none of the above. It's also $200 to join.
But, this, it seems to me, is the perfect vehicle. Heck, they have our audience. The people who need to learn the right stuff? Or at least some of them? They are members of this org!
While searching about delayed sleep phase, I ended up at the American Academy of Sleep Medicine. They are in a suburb of Chicago. Turns out Dr Picchietti mentioned them in our conversation last week! Amazing.
What he said was not good news, however. He said they didn't really do much about RLS.
So, I think that is a wonderful opportunity. Unfortunately, I can't see what they do provide to doctors, because you have to be a member. And, to be a member requires you to be in the medical field in some way, or a student. I am none of the above. It's also $200 to join.
But, this, it seems to me, is the perfect vehicle. Heck, they have our audience. The people who need to learn the right stuff? Or at least some of them? They are members of this org!
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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This is their mission statement:
The American Academy of Sleep Medicine serves its members and advances the field of sleep health
care by:
• Setting the clinical standards for the field of sleep medicine
• Advocating for recognition, diagnosis and treatment of sleep disorders
• Educating professionals dedicated to providing optimal sleep health care
• Fostering the development and application of scientific knowledge
Seems to me that this must include RLS, right? So, now we just need to find out what they do about RLS and how they advocate for its recognition.
Oh, yeah, I realize that RLS is considered a neurological disorder, but it's also called a sleep disorder. And, it's listed on their site as a sleep disorder. So, they are NOT escaping!
The American Academy of Sleep Medicine serves its members and advances the field of sleep health
care by:
• Setting the clinical standards for the field of sleep medicine
• Advocating for recognition, diagnosis and treatment of sleep disorders
• Educating professionals dedicated to providing optimal sleep health care
• Fostering the development and application of scientific knowledge
Seems to me that this must include RLS, right? So, now we just need to find out what they do about RLS and how they advocate for its recognition.
Oh, yeah, I realize that RLS is considered a neurological disorder, but it's also called a sleep disorder. And, it's listed on their site as a sleep disorder. So, they are NOT escaping!
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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woodsie357
- Posts: 147
- Joined: Wed Feb 04, 2009 7:54 am
Good morning everybody,
Ann, this is great! First, let's see how many of us can distribute (to receptive doctors) a packet of some sort which contains the basic RLS information that we want in doctors' hands. If you could find out if such a packet exists, please let us know how we can obtain it from the Foundation.
And, beyond contacting our individual doctors, I think that identifying and, if possible, contacting associations representing doctors in fields that already treat RLS (or that potentially could treat it) is a great idea also.
It's a shame, but as I remember, there were a few local support groups in the Chicago area not too long ago. The one in Joliet no longer exists, and the only remaining support group in the entire state of Illinois is in Champaign/Urbana.
At this point in my life, I'd like to participate in group meetings locally, so do you happen to know what it would take to establish a group? We need local groups to help all of us get (and pass along) ideas, educational information, etc., as well as to meet other RLS'ers. This forum is great, and the addition of opportunities to actually meet with and help one another in person will only enhance our opportunities to deal with and overcome the effects of this accursed disease.
Please let me know if there's anything I can do.
---Andy
Ann, this is great! First, let's see how many of us can distribute (to receptive doctors) a packet of some sort which contains the basic RLS information that we want in doctors' hands. If you could find out if such a packet exists, please let us know how we can obtain it from the Foundation.
And, beyond contacting our individual doctors, I think that identifying and, if possible, contacting associations representing doctors in fields that already treat RLS (or that potentially could treat it) is a great idea also.
It's a shame, but as I remember, there were a few local support groups in the Chicago area not too long ago. The one in Joliet no longer exists, and the only remaining support group in the entire state of Illinois is in Champaign/Urbana.
At this point in my life, I'd like to participate in group meetings locally, so do you happen to know what it would take to establish a group? We need local groups to help all of us get (and pass along) ideas, educational information, etc., as well as to meet other RLS'ers. This forum is great, and the addition of opportunities to actually meet with and help one another in person will only enhance our opportunities to deal with and overcome the effects of this accursed disease.
Please let me know if there's anything I can do.
---Andy
SquirmingSusan wrote:It already exists, Woodsie.
http://hcxlabs.com/case-study/disease-state-simulation/restless-legs-syndrome-simulator
I really like your idea of going into a doctor appointment with a rating system, and telling them you're going to rate them.
That thing looks like the devil incarnate. Imagine one of your worst RLS nights AND you have that thing on. Not that you ever would do that, but the thought of it makes me squirm in my seat.
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ViewsAskew
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Hi Andy, I think the two of us could work together locally; I'd like that if you would. I'll email you privately about what we could do regarding a support group.
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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mackjergens
- Posts: 406
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Could the RLS Foundation put together a packet that we RLSer's could order to take with us to Drs appts? We might be able to spread RLS info more quickly in this manner and it would also give us as patients a way to open a dialog with our Drs about RLS.
Possibly the RLS Foundation and Mayo Clinic could do this as a team, since so many Drs will read Mayo Clinic materail.
Would need to contain info.
Describe RLS symtoms
meds used to treat RLS, ALL of them
Right amounts of parkinson meds to be given for RLS/when and how to increase these meds.
Explanation of rebound and augumentation.
List of meds known to make RLS worse, including Antidpressants.
I am sure I have left off important info. so please add to this list.
Possibly the RLS Foundation and Mayo Clinic could do this as a team, since so many Drs will read Mayo Clinic materail.
Would need to contain info.
Describe RLS symtoms
meds used to treat RLS, ALL of them
Right amounts of parkinson meds to be given for RLS/when and how to increase these meds.
Explanation of rebound and augumentation.
List of meds known to make RLS worse, including Antidpressants.
I am sure I have left off important info. so please add to this list.
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ViewsAskew
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Mack, I think they do have an option - but it's not quite so simple as a packet. If you sign up your doctor, they provide him or her with information immediately and throughout the year. It was $75 the last I looked.
Given that my doctor might not even look at it, I've never done it. It might be a last shot across the bow of the doctor who completely botched treatment, along with a card that tells them how poorly they did and that you are paying for them to get up to speed...
I am guessing that many of us are not going to pay the $75.
But, joining the Foundation is one way to pass on info. I take my newsletters after I've read them and distribute them to various doctors in my life.
I am going to call the executive director of the Foundation sometime next week regarding something else. I'll see what I can find out. If anyone else has any questions they want answered, let me know.
I'd really appreciate it if everyone who wants something from the Foundation become a member of the Foundation, if you haven't already. It's not expensive, though I realize times are hard for many of us these days. If you can even donate $5, it will go to pay for what we're asking them to do for us.
I'd also encourage everyone here to push just a bit and do more than you do now, whatever that is. Upset because you don't have a local group or your local group doesn't provide what you need? Start one. Wishing that doctors "got it"? Then find a way to help them. I realize we all don't have the time, energy or money to contribute in every possible way. We may be able to find a way we haven't thought of before that doesn't tax our personal resources beyond what we can handle.
Given that my doctor might not even look at it, I've never done it. It might be a last shot across the bow of the doctor who completely botched treatment, along with a card that tells them how poorly they did and that you are paying for them to get up to speed...
I am guessing that many of us are not going to pay the $75.
But, joining the Foundation is one way to pass on info. I take my newsletters after I've read them and distribute them to various doctors in my life.
I am going to call the executive director of the Foundation sometime next week regarding something else. I'll see what I can find out. If anyone else has any questions they want answered, let me know.
I'd really appreciate it if everyone who wants something from the Foundation become a member of the Foundation, if you haven't already. It's not expensive, though I realize times are hard for many of us these days. If you can even donate $5, it will go to pay for what we're asking them to do for us.
I'd also encourage everyone here to push just a bit and do more than you do now, whatever that is. Upset because you don't have a local group or your local group doesn't provide what you need? Start one. Wishing that doctors "got it"? Then find a way to help them. I realize we all don't have the time, energy or money to contribute in every possible way. We may be able to find a way we haven't thought of before that doesn't tax our personal resources beyond what we can handle.
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.