I saw a doctor listed on this site as an expert in rls for my area in thousand oaks. Dr Label misinformed me that because i had the discomfort in my arms and legs it couldnt be restless leg syndrome. I went to UCLA neurology department where I found out as I already knew from this website that it was rls.
there were some other things that i was unhappy about but it would not be appropriate to list them here.
be careful accepting a doctors self description as an expert in rls.
wATCHOUT WHEN CHOOSING A NEUROLOGIST
HI SFires,
I'm sorry you had that experience, trust me it's not the first time.
What I would ask is that you please PM me with the name and a brief explantion. I will foward the information to the Foundation and they can check into that doctor being on the list.
We have all seemingly seen at least 5-10 doctors and most got it all wrong. It cost us money, time, emotions, and stress. Trust me when I tell you your not alone.
RLS is like many other unknown disorders, so many doctors just flat get it wrong. Such a shame. There are great doctors out there and researchers. It would be great if the medical community would quickly educate itself about RLS.
There have been many that have come before me and you, that have cleared some major stones in this path, but there is still more to be done. I hope you see from being around here that we are normally a proactive group. We try to teach each other, so that we gain as a community.
I hope you know that you are open to support and education, a shoulder, or an ear here.
We row for each other some days and with each other on other days. Yes, there are times that we go around in circles, but we always manage to find our way.
Thanks for posting and welcome to the board. Post as you please. We learn best from one another.
Hugs, love, and the moon
Lynne/Becat
I'm sorry you had that experience, trust me it's not the first time.
What I would ask is that you please PM me with the name and a brief explantion. I will foward the information to the Foundation and they can check into that doctor being on the list.
We have all seemingly seen at least 5-10 doctors and most got it all wrong. It cost us money, time, emotions, and stress. Trust me when I tell you your not alone.
RLS is like many other unknown disorders, so many doctors just flat get it wrong. Such a shame. There are great doctors out there and researchers. It would be great if the medical community would quickly educate itself about RLS.
There have been many that have come before me and you, that have cleared some major stones in this path, but there is still more to be done. I hope you see from being around here that we are normally a proactive group. We try to teach each other, so that we gain as a community.
I hope you know that you are open to support and education, a shoulder, or an ear here.
We row for each other some days and with each other on other days. Yes, there are times that we go around in circles, but we always manage to find our way.
Thanks for posting and welcome to the board. Post as you please. We learn best from one another.
Hugs, love, and the moon
Lynne/Becat
I think the best way to ensure that you can get appropriate treatment from any doctor is to educate yourself first and go in armed with information. Before I went into a doctors office I printed the medical bulletin from the rls foundation's website and brought it in with me. I read the entire thing of course and then added comments regarding my own experience in each corresponding section of the bulletin. I checked off all of the symptoms I had and made a point of narrowing down on the major issues I wanted to speak to my dr about. Tingly sensation, pain, sleep deprivation, previously unbeneficial meds and meds i'd like to try, etc. whatever is bothering you the most. Doctors, knowledgable or not, are very busy people and also don't like to be told they don't know about something. So when I went in I had my information ready. I brought up just a couple of the most important things for me (sleep & pain) and stuck to those topics, instead of just going in with lots of general complaints. I gave my dr. a copy of the bulletin with all my notes on it and pointed out the info to him as I went along to back up what I was feeling. I left that copy of the bulletin with him and asked him to just look it over whenever he got a chance. I believe that this allowed him to see information that backed me up as we went along and I didn't come off in a way that made him feel like I was tryng to teach him something. But I did teach him something and now he has a reference for treating me and he's learned a bit more about rls. The most important thing is finding a doctor who will listen to you. If you go in and a doctor immediately dismisses your information and your conversation then you need to get out of there and find another one. It's a drag and most dr's will listen if you present your case in this way but some of them just won't give you the respect that they should. Don't waste your time with those. If you keep your visit as short as possible and stick to the major points and have info at hand to show them as you go along I think it will be a tremendous benefit and time saver. It's up to us to take control of our healthcare as much as possible. Good luck!
The light of a good character surpasseth the light of the sun
Awesome Post Beanie,
I guess I should have said what you said instead of what I wrote. Because, that is what most of us have learned already over the years of just trying to find treatment. Bravo to you for spelling it out so well.
I also think that after you see 3-5 doctors and take 25 test, ex rays, MRIs, etc....and here that nothing is showing up as a problem, we become gun shy of going in yet again to prove our case and our need for help. It's hard to hear time after time, there is nothing wrong, when it's obvious to us there is a problem.
I am lucky to have an expert in the RLS community and I live in a large metro area, so I could even have choices. But like so many others here, I'd be willing to go anywhere if I could get the right kind of help. With that said......
I am my own worst enemy most times and still have a hard time sharing with my doctor what he probably should know. EX: extra stress, a change in lifestyle, other illnesses that have popped up between visits. It maybe just as simple as I've bitten off more than I can chew.
I'm learning and I practice being brave here and clam up when he puts on that white coat. Funny really, because I would never clam up if I were helping someone else in need. Jan might agree with that one.
Beanie your right, I did finally cut it down to I want sleep and managable pain, period. This was after I did most of what he asked of me, trying many medications, some with a little luck some with none.
As for the docs on the listings here, there was a large cut in the listings just last year, but it is important for the Foundation to know about problems that people have had with a doc.. I hope that is well taken and understood. It is going to "US" that makes the list workable. if we don't alert the Foundation to those that may hurt us, they cannot be held for answers to the listing. So really I think this is where we can get the foundation to work for us.
Love hugs and that moon for us all.
Lynne
I guess I should have said what you said instead of what I wrote. Because, that is what most of us have learned already over the years of just trying to find treatment. Bravo to you for spelling it out so well.
I also think that after you see 3-5 doctors and take 25 test, ex rays, MRIs, etc....and here that nothing is showing up as a problem, we become gun shy of going in yet again to prove our case and our need for help. It's hard to hear time after time, there is nothing wrong, when it's obvious to us there is a problem.
I am lucky to have an expert in the RLS community and I live in a large metro area, so I could even have choices. But like so many others here, I'd be willing to go anywhere if I could get the right kind of help. With that said......
I am my own worst enemy most times and still have a hard time sharing with my doctor what he probably should know. EX: extra stress, a change in lifestyle, other illnesses that have popped up between visits. It maybe just as simple as I've bitten off more than I can chew.
I'm learning and I practice being brave here and clam up when he puts on that white coat. Funny really, because I would never clam up if I were helping someone else in need. Jan might agree with that one.
Beanie your right, I did finally cut it down to I want sleep and managable pain, period. This was after I did most of what he asked of me, trying many medications, some with a little luck some with none.
As for the docs on the listings here, there was a large cut in the listings just last year, but it is important for the Foundation to know about problems that people have had with a doc.. I hope that is well taken and understood. It is going to "US" that makes the list workable. if we don't alert the Foundation to those that may hurt us, they cannot be held for answers to the listing. So really I think this is where we can get the foundation to work for us.
Love hugs and that moon for us all.
Lynne
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bradyferguson
- Posts: 74
- Joined: Tue Sep 21, 2004 1:29 pm
i can remember when i was diagnosed ..... it was shuch a relief that it had a name .... at the time (about 12 years ago it was) i never really talked about rls as it was managed quite well over the past 8 or 9 years. Really only been the last 2 to 3 that i have had difficulties. Not too shabby as far as diseese's go.
so after being diagnosed ... i took a pill a day and it was totally managed.
so it is not always a death sentence so to speek. But not for the fact that i was subsiquently injured due to my inability to lift 525 pounds in a squat i would may never have heard from my rls again. that is what i believe anyway.
dont be shy in here sfires as this is the best place to speak your mind. no one here will judge and we always listen. and besides ... by sharing your thoughts it just might help someone like me .... a broken candadian soldier with an IQ of a hockey puck. (what the relevance of that is i am not sure)
hope i made u smile
as i am grinning as i type (ya i laugh at my own jokes)
and when you dont get my jokes it can be horrifying.....
that is thinking a sane person could come up with such rambelings.
Hi again to everyone
enjoy being back on the board
later
brady
so after being diagnosed ... i took a pill a day and it was totally managed.
so it is not always a death sentence so to speek. But not for the fact that i was subsiquently injured due to my inability to lift 525 pounds in a squat i would may never have heard from my rls again. that is what i believe anyway.
dont be shy in here sfires as this is the best place to speak your mind. no one here will judge and we always listen. and besides ... by sharing your thoughts it just might help someone like me .... a broken candadian soldier with an IQ of a hockey puck. (what the relevance of that is i am not sure)
hope i made u smile
as i am grinning as i type (ya i laugh at my own jokes)
and when you dont get my jokes it can be horrifying.....
that is thinking a sane person could come up with such rambelings.
Hi again to everyone
enjoy being back on the board
later
brady
LOL
LOL Sfires, it's true Brady does laugh at his own jokes.LOL
Hi Brady, nice to see you fluttering around here again.
I hope all is well with the family and those 3 girls that make your life special.
Glad to have you around.
Be well, sending you a hug, and love,
Lynne/Becat
Hi Brady, nice to see you fluttering around here again.
I hope all is well with the family and those 3 girls that make your life special.
Glad to have you around.
Be well, sending you a hug, and love,
Lynne/Becat
Re: Careful of doctor you go to
Hi: Just read your posts about going to "experts" who weren't "experts". I have seen my share of them. One, years ago, laughed at me and ask me where I heard of rls, "on Oprah Winfrey"? I was so taken aback that I was speechless. But I did send him a letter marked "personal", with copies of information from reputable doctors and hospitals that were doing research on rls. Much later, I received an envelope with his letter head and my check, that I had paid him, marked VOID. But not an apology. I resently went to a neurologist, suggested by my primary doctor. She was very nice, and knew some about rls, but some things she wasn't aware of. I mentioned the information that has been so helpful from this site, and she said she would have to check into it. 
So I'm going for an MRI, and I hope to get some good results. She said I'm on the right meds. , neurontin and clonazapam but she increased my neurontin, since it was a low dose. I love venting on this site, it is so helpful. Sometimes I think friends and family feel I am exagerating, or nuts or something. My husband does know how much I suffer as he sees it with his own eyes. Wish you all happiness and relief from this horrible demon we fight., rls. 
BETTY/WV
So I'm going for an MRI, and I hope to get some good results. She said I'm on the right meds. , neurontin and clonazapam but she increased my neurontin, since it was a low dose. I love venting on this site, it is so helpful. Sometimes I think friends and family feel I am exagerating, or nuts or something. My husband does know how much I suffer as he sees it with his own eyes. Wish you all happiness and relief from this horrible demon we fight., rls. BETTY/WVThanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand
I lucked out in going to a neurologist who was recommended by my orthopod. He's now also listed in our directory, but at the time was no expert. What he was, however, was a good man who seemed thrilled that he had just read an article which he found while I was there, copied and we read it together and I said "Eureka, that's it. That's what I have!!" So he did a little more quick research on the spot, put me on Scinimet and Klonopin and I slept like a baby that night.
My point? Sometimes it's more luck than skill in finding the right doc. This one was no expert, but he cared and he was thrilled to be able to help me. He's still my doc to this day, 13 years later, and no doubt IS an expert now.
Know your stuff on this stuff and punt on a doc who doesn't know, or more importantly, doesn't care enough about you to find out. I'm sure there's a trick to get a referral of someone in your area who does know our plight. Don't give up on our directory as a place to look in lieu of actually knowing someone who is a good one.
Good luck. Once you find the right doc, that hurdle is behind you and you can move forward with faith and hope!!
My point? Sometimes it's more luck than skill in finding the right doc. This one was no expert, but he cared and he was thrilled to be able to help me. He's still my doc to this day, 13 years later, and no doubt IS an expert now.
Know your stuff on this stuff and punt on a doc who doesn't know, or more importantly, doesn't care enough about you to find out. I'm sure there's a trick to get a referral of someone in your area who does know our plight. Don't give up on our directory as a place to look in lieu of actually knowing someone who is a good one.
Good luck. Once you find the right doc, that hurdle is behind you and you can move forward with faith and hope!!
Smile! If it doesn't help you, and it likely will, it surely will help someone else!!!
Just Mike!
Just Mike!
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ViewsAskew
- Moderator
- Posts: 16744
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
Mike, that really is the most important characteristic - they CARE to help you figure it out. Second, is that they will go the distance. My PC cares, but she won't go the distance because she's afraid of the opioids. Third is the willingness to learn whatever it takes to do the first two.
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.
same here my, my orthopedic doc sent me to this neurologist, and he said he knew what was wrong with me before I opened my mouth and told him, because i was rubbing my legs, pacing his office and could not sit on those hard chairs or table in the exam room. he said you have rls! i was like finally someone confirms it, now make it go away so i can get some friggin sleep! lol
dee
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
I was referred to a neurologist and it turned out his wife has RLS so he is very familiar with it. He told me they took a trip to Tahiti and her RLS kicked in and her normal dose of Miripex didn't cut it. He said he had to give her the maximum you are allowed to have in 24 hours to get her through the flight. At least I feel he knows what it's like and has some first hand experience in treating RLS.
BLR