What if doctors starting reading this forum? Jumpy had gotten lots of info for his research. It just occured to me that doctors and researchers would gain SO MUCH if they stopped in once an awhile. We have some awesome ideas here. We're making correlations, we're sharing symptoms, we're doing research in a way. Now, how do we get them here? Maybe if we emailed every doctor on this site's "preferred doctor" list, that would get some started. I don't want advice from them, just want them to hear us and listen and maybe change their thinking about who we are, how we experience this disease. Sort of a correlary to the Life Statements.
Just rambling and dreaming,
Ann
Doctors, come on down!
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ViewsAskew
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ViewsAskew
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OK, so I decided to write a letter. It may never get read, but what if each of us mailed such a letter to the doctors listed on this site that are close to us? The person opening the mail may toss it, but maybe they will pass it on. So, here's my first draft.
Dear Dr.
I hope that this letter reaches you and that you take a few minutes of your valuable time to read it. I have RLS and PLMD and found your name on the Restless Legs Foundation Website as someone who treats RLS. I participate in the discussion board on that Website and am wondering if you are familiar with it.
As of this writing, we have over 550 members from around the world. As a group, we think that we may provide a source of information to you that you won’t find in a textbook, or a study, or from another colleague. We offer real stories of what we go through, of our symptoms, of our experiences (good, bad, and indifferent) with our treatment providers, we provide hope, we provide a place to share.
What we all have in common is that we do or can have our sleep affected, prevented, or interrupted by some type of leg/arm/body sensation or movement. This may occur while awake or while asleep, it may or may not be involuntary, and it may or may not occur with pain. Then we have a whole host of other symptoms that some of us share and others do not.
I’m inviting you to take a bit of your time and come and meet us. You might be surprised how smart we are. You might be interested in some of our theories and connections we’ve made between us. You might find that learning about RLS from us helps you in your practice to be a better doctor to your patients.
We want you to know us better so you can help us better. We want your understanding on a personal level. We want you to hear us. We want you to partner with us when we need your help. We can’t think of a better way than for you to spend some time with us. Please come. We think it will be worth your time.
Sincerely,
Dear Dr.
I hope that this letter reaches you and that you take a few minutes of your valuable time to read it. I have RLS and PLMD and found your name on the Restless Legs Foundation Website as someone who treats RLS. I participate in the discussion board on that Website and am wondering if you are familiar with it.
As of this writing, we have over 550 members from around the world. As a group, we think that we may provide a source of information to you that you won’t find in a textbook, or a study, or from another colleague. We offer real stories of what we go through, of our symptoms, of our experiences (good, bad, and indifferent) with our treatment providers, we provide hope, we provide a place to share.
What we all have in common is that we do or can have our sleep affected, prevented, or interrupted by some type of leg/arm/body sensation or movement. This may occur while awake or while asleep, it may or may not be involuntary, and it may or may not occur with pain. Then we have a whole host of other symptoms that some of us share and others do not.
I’m inviting you to take a bit of your time and come and meet us. You might be surprised how smart we are. You might be interested in some of our theories and connections we’ve made between us. You might find that learning about RLS from us helps you in your practice to be a better doctor to your patients.
We want you to know us better so you can help us better. We want your understanding on a personal level. We want you to hear us. We want you to partner with us when we need your help. We can’t think of a better way than for you to spend some time with us. Please come. We think it will be worth your time.
Sincerely,
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cornelia
Ann, that is superb. Great letter.
I have always wondered myself why doctors don't read the fora. They get the best of information there. In fact I discussed it with my neuro. He answered of course due to lack of time. But every time I visit him he asks what happens in the RLS-groups, knowing that I have educated myself on the subject. He respects that. He is great, my neuro, though my RLS is still horrible from time to time.
There is actually one docter that I know of who does read messages in the Cyberspacegroup and that id dr Wayne Hening, who is on the Foundation Board and researcher. I think he spoke in Long Beach. He commented on refractory RLS lately in this group.
Let's hope that there are some lurker-docters.
Anyway, thanks for writing this letter. I agree with you totally.
Corrie
I have always wondered myself why doctors don't read the fora. They get the best of information there. In fact I discussed it with my neuro. He answered of course due to lack of time. But every time I visit him he asks what happens in the RLS-groups, knowing that I have educated myself on the subject. He respects that. He is great, my neuro, though my RLS is still horrible from time to time.
There is actually one docter that I know of who does read messages in the Cyberspacegroup and that id dr Wayne Hening, who is on the Foundation Board and researcher. I think he spoke in Long Beach. He commented on refractory RLS lately in this group.
Let's hope that there are some lurker-docters.
Anyway, thanks for writing this letter. I agree with you totally.
Corrie
HEY ALL Every time I go to the doc I tell them to come here if they want to learn something about rls, in a nice way of course. I wouldnt be surprised if alot of docs come in here and check it out. MAYBE. COME ONE COME ALL GATEKEEPERS WELCOME!!!!! Sorry its been a tough week and since I dont have a punching bag I thought Id come here. For all of you who know me, I need to vent now and again or I end up with a panic attack, so Im venting********IM SICK TO DEATH OF THIS BULL****!!! AHHHHH a little better now. I have been reading the posts all week and ladies I hear ya and I am left speechless at the words I read. What can I possibly say to make things better for you? What do I say to myself... I hate this and when I loose my emotions like that then IT wins.. I dont like feeling hate emotions for anything but I HATE this without a doubt. Life should not have to be such a struggle. I know that!!!!!!! And my heart goes out to all of us. We are no doubt the SPECIAL ONES cause I know GOD knows what he is doing ya know what I mean~~~~~~~~~~~~~~~Lyndarae 
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ViewsAskew
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