The preliminary survey “LIFE WITH RLS “ based on 120 completed questionnaires is now closed. The replies have been collated interpreted, and were presented at the 2nd National Meeting of the RLS Foundation by Frank J. Holly, the introduction very capably delivered by Becat. The material is available to anyone who requests it (and has access to a Microsoft Powerpoint program.) Please send a request to fjholly@tsunami.he.net and provide your e-mail address.
Based on the experience of gathering and interpreting the preliminary survey, a new, improved survey form has been prepared and is now on-line and accessible to all! This new form is more compehensive, easier to complete, there is less of a chance in making a mistake in evaluation, privacy will be better protected, and will provide considerably more and more useful information than the original one (thanks to Nadia and Tom).
Please visit:
www.thomasholly.net/survey/rlssurvey.aspx
CAVEAT! There are various safe guards built into the web page to prevent abuse and thus make the data safer and more reliable.
At the start you will have several chances to read the long introduction background on the survey or to skip it and go directly to the survey.
Once you start the survey, you will not be able to proceed to the next page unless you answer all the questions required. If you are unable to proceed, scroll through the section again and see whether there is a red lettered warning reminding you to answer the omitted queries. (It can happen rarely that one cannot select any of the choices offered for one particular question and so cannot proceed. In that case, just pick any one of the choices and explain at the end [REMARK section] that that particular choice is invalid and why).
You can always go back and check or correct your answers. However, once you press the submit button, the survey disappears and you will not be able to complete another one and submit it again. This is done so to prevent abuse.
Again, anyone who participates in this survey will receive the final results. As new questions come up in connection with RLS in the future, another survey will be prepared which will be a continuation of this one. Only those who completed the first on-line survey will be able to participate in the second one.
The idea behind this serial survey is to keep up with progress in the field and possibly provide useful information to health care-takers, researchers, and pharmaceutical companies thereby aid progress. Each Addendum will be prepared and placed on-line as the need for new information accummulates.
Sincerely, Dr. Holly
PLEASE READ IF INTERESTED AND WANT TO HELP!
PLEASE READ IF INTERESTED AND WANT TO HELP!
This is the standard reply I send to those who writes to me and wants the preliminary questionnaire. So far there are 44 responses. This will be the definitive one which I hope to publish one way or the other. Please help spread the word.
Jumpy Owl
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Hi Jumpy
So Good to see your name on this board again.
Ok, mine is all done.
Yes, I promise to be a good girl and not rush these answers. Can't wait to hear more about your trips with this project.
Remember to take care of yourself, rest every so often.
Hope you and yours are having a wonderful day.
Love and hugs, and wishes of peace to you.
Ok, mine is all done.
Yes, I promise to be a good girl and not rush these answers. Can't wait to hear more about your trips with this project.
Remember to take care of yourself, rest every so often.
Hope you and yours are having a wonderful day.
Love and hugs, and wishes of peace to you.
MAGIC DISCUSSION BOARD
Believe it or not I already answered these queries from some of my favorite ladies last night around 2 AM. I am unable to find it now in the morning light. Here I try again.
I suspect, as a matter of fact I am sure, that all you already filled this form out. I remember Cornelia commenting on it, then Jan who had to go to court. Again I quote from my message:
So this is why BeCat could do it and you ladies could not. This is still the same on-line survey which was put on prior to Long Beach.
BeCat! I am not sure what travel you mean. I have been busy about my expertise. I have a small chance to turn the research effort costing literally billions of dollars in the right direction. I can't even describe my feelings when at this pR meeting, almost exactly twenty years after my modest but well attended meeting in Lubbock, TX, I was sitting in the audience taking the truly fancy research reports in when at the summary section given by those in power, it became clear that the misdirection at the tenth anniversary (the workshop where anyone from my school of thoughts was NOT invited), is still loud and clear pointing in the wrong direction. This is so because the person (my age) is still going strong and has retained his power. Despite the money and efforts spent, now we have more dry eye patients (thanks to lasik surgery) and the treatment is more inferior than was twenty years ago!
Fortunately, I will have a chance in Madrid, Spain more than once to make my views known. That is what I am working on!
Sorry to diverge. And perhaps, just perhaps this is why I am not as welcome by the leadership here as I thought I would be. Once a trouble maker, always a trouble maker.
I hope this post will not sublimate away!
I suspect, as a matter of fact I am sure, that all you already filled this form out. I remember Cornelia commenting on it, then Jan who had to go to court. Again I quote from my message:
You can always go back and check or correct your answers. However, once you press the submit button, the survey disappears and you will not be able to complete another one and submit it again. This is done so to prevent abuse.
So this is why BeCat could do it and you ladies could not. This is still the same on-line survey which was put on prior to Long Beach.
BeCat! I am not sure what travel you mean. I have been busy about my expertise. I have a small chance to turn the research effort costing literally billions of dollars in the right direction. I can't even describe my feelings when at this pR meeting, almost exactly twenty years after my modest but well attended meeting in Lubbock, TX, I was sitting in the audience taking the truly fancy research reports in when at the summary section given by those in power, it became clear that the misdirection at the tenth anniversary (the workshop where anyone from my school of thoughts was NOT invited), is still loud and clear pointing in the wrong direction. This is so because the person (my age) is still going strong and has retained his power. Despite the money and efforts spent, now we have more dry eye patients (thanks to lasik surgery) and the treatment is more inferior than was twenty years ago!
Fortunately, I will have a chance in Madrid, Spain more than once to make my views known. That is what I am working on!
Sorry to diverge. And perhaps, just perhaps this is why I am not as welcome by the leadership here as I thought I would be. Once a trouble maker, always a trouble maker.
I hope this post will not sublimate away!
Jumpy Owl
On-Line Survey
Jumpy
I'm sorry I misunderstood. I thought it sounded like this was a NEW survey. You might want to add that I now have been diagnosed with fibromyalgia. I told you that in another post, but I'm not sure you saw that part of my post.
Jan
I'm sorry I misunderstood. I thought it sounded like this was a NEW survey. You might want to add that I now have been diagnosed with fibromyalgia. I told you that in another post, but I'm not sure you saw that part of my post.
Jan
No one is alone who had friends.
Okay, it's not SURPRISING, knowing me... but now I'm REALLLY confused! 
I thought when I first read your post, Jumpy, that it was the same survey. But when Becat filled it out, it made me re-read it, and it sounded like a new one.
I went earlier this morning and filled it out, no problem. But if it's the same one as was on-line before Long Beach, I'm thinking based on what you told Jan, it should have refused me, because I filled that one out, too. (This is my third questionnaire for you, Jumpy, my dear.)
Soooo... maybe I typoed my e-mail or something? If you end up with duplicates, consider the source.
Hugs to all. Sara
I thought when I first read your post, Jumpy, that it was the same survey. But when Becat filled it out, it made me re-read it, and it sounded like a new one.
I went earlier this morning and filled it out, no problem. But if it's the same one as was on-line before Long Beach, I'm thinking based on what you told Jan, it should have refused me, because I filled that one out, too. (This is my third questionnaire for you, Jumpy, my dear.)
Soooo... maybe I typoed my e-mail or something? If you end up with duplicates, consider the source.
Hugs to all. Sara
TWIMC
I will do that Jan! How many pressure points did you score positive on?
Sara, I am not sure. I will taLK TO THE EXPERT tonight. Then pick the best one of the three.
Sara, I am not sure. I will taLK TO THE EXPERT tonight. Then pick the best one of the three.
Jumpy Owl
Pressure points
Hi Jumpy, it's Jan
Wellllllll........I really don't know how many pressure points I scored on because my neurologist (who diagnosed me) didn't tell me, AND I'm not sure he did a complete test. I did feel him do several and they hurt, but, for the sake of your survey, I really can't tell you. And, our last visit was not the best (if you'll read my answer to Ann, you'll see), so I really don't feel that free to call and ask him. Sorry, Jumpy. However, he's certain that I have fibro and so am I. I'm sorry I'm so vague--I don't mean to be. I am going to have my GP refer me to a rheumotologist ASAP. I have an appointment with my GP in a week and I'm positive she'll do a referral for me.
When I find out more, I'll be sure to let you know, okay?
Thanks.
Jan
Wellllllll........I really don't know how many pressure points I scored on because my neurologist (who diagnosed me) didn't tell me, AND I'm not sure he did a complete test. I did feel him do several and they hurt, but, for the sake of your survey, I really can't tell you. And, our last visit was not the best (if you'll read my answer to Ann, you'll see), so I really don't feel that free to call and ask him. Sorry, Jumpy. However, he's certain that I have fibro and so am I. I'm sorry I'm so vague--I don't mean to be. I am going to have my GP refer me to a rheumotologist ASAP. I have an appointment with my GP in a week and I'm positive she'll do a referral for me.
When I find out more, I'll be sure to let you know, okay?
Thanks.
Jan
No one is alone who had friends.
Hi Jan:
This is not for the survey, I was just interested for Gloria'ssake as well as yours. I think there are 18 and if you score on 11 then you definitely have it.
One graph in my talk showed the responses to the question as to which specialty the doctor had who was the best of managing RLS. Neurologist was the best, sleep doctor was represented fairly well. Nobody claimed a rheumatologist! which surprised me. Perhaps you will luck out. Then let me know so I can add it to your survey form.
One graph in my talk showed the responses to the question as to which specialty the doctor had who was the best of managing RLS. Neurologist was the best, sleep doctor was represented fairly well. Nobody claimed a rheumatologist! which surprised me. Perhaps you will luck out. Then let me know so I can add it to your survey form.
Jumpy Owl
Best Specialist for RLS
Hi Jumpy, it's Jan
I probably didn't make myself clear, Jumpy. My neuro will still manage my RLS. But, I've been told I need to see a rhematologist for the fibro. My neuro, after diagnosing the fibro, told me he couldn't treat it, but didn't refer me to a rheumatologist. And, after the appointment, I was a little "battle fatigued" to remember to ask him to do so. But my neuro was positive I have fibro. I know I've had two really bad flares--it hurts to turn over in bed, I have pain all over my body (I would say an 8 on the scale), and I have had occasions where I have had a lot of trouble walking. My pain started in my legs (nothing like RLS) and extended to my arms, hands, fingers, shoulders, and I have had really bad migraines. I'm extremely stiff after sitting still for just a short time. Cold, wet weather makes me feel a lot worse. It is a totally different feeling than RLS. So, I assume he's right. I probably haven't mentioned (or remembered) all of my symptoms. I've talked to several people I know who have fibro and they exhibit the same symptoms. I would be interested to know if this is the way Gloria feels. I know she has a severe case, is that correct? She certainly has my sympathy, because when it's bad, it is BAD!
I'll be sure to let you know what happens!
Thanks Jumpy!
Jan
I probably didn't make myself clear, Jumpy. My neuro will still manage my RLS. But, I've been told I need to see a rhematologist for the fibro. My neuro, after diagnosing the fibro, told me he couldn't treat it, but didn't refer me to a rheumatologist. And, after the appointment, I was a little "battle fatigued" to remember to ask him to do so. But my neuro was positive I have fibro. I know I've had two really bad flares--it hurts to turn over in bed, I have pain all over my body (I would say an 8 on the scale), and I have had occasions where I have had a lot of trouble walking. My pain started in my legs (nothing like RLS) and extended to my arms, hands, fingers, shoulders, and I have had really bad migraines. I'm extremely stiff after sitting still for just a short time. Cold, wet weather makes me feel a lot worse. It is a totally different feeling than RLS. So, I assume he's right. I probably haven't mentioned (or remembered) all of my symptoms. I've talked to several people I know who have fibro and they exhibit the same symptoms. I would be interested to know if this is the way Gloria feels. I know she has a severe case, is that correct? She certainly has my sympathy, because when it's bad, it is BAD!
I'll be sure to let you know what happens!
Thanks Jumpy!
Jan
No one is alone who had friends.