Process for going to a Referral Center

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Ladyslider
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Joined: Wed Sep 06, 2017 3:46 pm

Process for going to a Referral Center

Postby Ladyslider » Sat Oct 21, 2017 5:24 pm

I am at the end of my rope with dealing with RLS. My neurologist has done all she can for me and is becoming reluctant to continue prescribing the 10mg of Oxycontin needed to control my symptoms.(Also on Lyrica which doesn't seem to be doing anything for me).

The closest referral center is in Atlanta, GA for me. Has anyone been to this clinic and what were your results and outcomes? Which dr did you see? Did you need a referral from your personal MD or can you make an appointment on your own? How long did it take to get an appointment? After the specialist sees you what happens from there? I mean with all the opioid restrictions and all (if they determine that's what's needed in my situation) how do you get the prescription filled and kept ongoing? Sorry for all the questions but not sure how to prepare for this visit. Should I have my neurologist send her notes to the dr I'm scheduled to see?

Thanks for all and any suggestions and experiences.

ViewsAskew
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Re: Process for going to a Referral Center

Postby ViewsAskew » Sat Oct 21, 2017 8:13 pm

I have not been to any of the Quality Care Centers; Dr. Rye is out of Emory and is one of my favorite RLS specialists - because he HAS RLS. He completely gets what happens to us. If I could see him, I would do it in a heartbeat. Not to say other docs there are not likely excellent. I imagine there could be a bad egg in these places, but imagine it is unlikely. They have to prove they understand it, will prescribe appropriately for it, and know how to handle augmentation, etc.
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.

Rustsmith
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Re: Process for going to a Referral Center

Postby Rustsmith » Sat Oct 21, 2017 9:00 pm

I cannot say anything specific about the QCC in Atlanta, but I use to go to the one in Houston and my clinic in Denver is in the process (I hope).

When you call to make an appointment, they will tell you what you need to provide. In Houston, they asked for records but I explained that I had just fired my previous doctor and so I would bring in the paperwork that I had. That satisfied them on that count. In both Houston and Denver, the wait time to get a new patient appointment was about 3 months. I got lucky in Houston because the called a few days later with a cancellation in 3 weeks, which I was thrilled to get. In both Houston and Denver, I continued to see my doctor at the QCC because there was no one for them to send me back to, even though my doctor in Denver is supposed to be a tertiary care doctor, which means my GP was supposed to send me to a neurologist who referred me to Denver. But that would not work for my situation.

As for opioids, it is my understanding that one of the criterion to become a QCC is a willingness to prescribe opioids, when needed. As for getting them filled, I cannot get my prescriptions filled by any pharmacy in the town where I live because there was a pill mill here a few years ago and so there is still extra DEA oversight. So, my doctor writes my prescriptions in such a way as to provide me with enough pills to last me 90 days. I then send this to the mail order pharmacy dictated by my insurance. I schedule doctor visits every 90 days, so everything is working out for now. In the event that I have to miss an appointment (my doctor is 100 miles away and there is a 7600 ft pass between, which can complicated winter visits), we worked out a procedure where my doctor mails the prescription to me, which I immediately pass along to the pharmacy.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

leggo_my_legs
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Joined: Sun Oct 16, 2016 12:29 am

Re: Process for going to a Referral Center

Postby leggo_my_legs » Sat Oct 21, 2017 9:09 pm

Ladyslider, good luck to you! I'm going through a similar situation. I hope you can get the help you need quickly. I know how awful it can be. It can be hard to take the step to go to a specialist, at least it was for me. So good for you for doing that! I've been posting on this subject a lot recently, feel free to read for a kindred spirit. So many of us are.

Ladyslider
Posts: 30
Joined: Wed Sep 06, 2017 3:46 pm

Re: Process for going to a Referral Center

Postby Ladyslider » Sun Oct 22, 2017 12:55 am

ViewsAskew wrote:I have not been to any of the Quality Care Centers; Dr. Rye is out of Emory and is one of my favorite RLS specialists - because he HAS RLS. He completely gets what happens to us. If I could see him, I would do it in a heartbeat. Not to say other docs there are not likely excellent. I imagine there could be a bad egg in these places, but imagine it is unlikely. They have to prove they understand it, will prescribe appropriately for it, and know how to handle augmentation, etc.


How can I reach this dr? What department does he/she work out of? Thanks.

Ladyslider
Posts: 30
Joined: Wed Sep 06, 2017 3:46 pm

Re: Process for going to a Referral Center

Postby Ladyslider » Sun Oct 22, 2017 12:57 am

Rustsmith wrote:I cannot say anything specific about the QCC in Atlanta, but I use to go to the one in Houston and my clinic in Denver is in the process (I hope).

When you call to make an appointment, they will tell you what you need to provide. In Houston, they asked for records but I explained that I had just fired my previous doctor and so I would bring in the paperwork that I had. That satisfied them on that count. In both Houston and Denver, the wait time to get a new patient appointment was about 3 months. I got lucky in Houston because the called a few days later with a cancellation in 3 weeks, which I was thrilled to get. In both Houston and Denver, I continued to see my doctor at the QCC because there was no one for them to send me back to, even though my doctor in Denver is supposed to be a tertiary care doctor, which means my GP was supposed to send me to a neurologist who referred me to Denver. But that would not work for my situation.

As for opioids, it is my understanding that one of the criterion to become a QCC is a willingness to prescribe opioids, when needed. As for getting them filled, I cannot get my prescriptions filled by any pharmacy in the town where I live because there was a pill mill here a few years ago and so there is still extra DEA oversight. So, my doctor writes my prescriptions in such a way as to provide me with enough pills to last me 90 days. I then send this to the mail order pharmacy dictated by my insurance. I schedule doctor visits every 90 days, so everything is working out for now. In the event that I have to miss an appointment (my doctor is 100 miles away and there is a 7600 ft pass between, which can complicated winter visits), we worked out a procedure where my doctor mails the prescription to me, which I immediately pass along to the pharmacy.


Thank you this was very helpful information. I can tell you have traveled the road before me!

Ladyslider
Posts: 30
Joined: Wed Sep 06, 2017 3:46 pm

Re: Process for going to a Referral Center

Postby Ladyslider » Sun Oct 22, 2017 12:59 am

leggo_my_legs wrote:Ladyslider, good luck to you! I'm going through a similar situation. I hope you can get the help you need quickly. I know how awful it can be. It can be hard to take the step to go to a specialist, at least it was for me. So good for you for doing that! I've been posting on this subject a lot recently, feel free to read for a kindred spirit. So many of us are.


Thank you for your kind words of encouragement. I love your username, by the way :D

ViewsAskew
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Location: Chicago

Re: Process for going to a Referral Center

Postby ViewsAskew » Sun Oct 22, 2017 4:21 am

Ladyslider wrote:
ViewsAskew wrote:I have not been to any of the Quality Care Centers; Dr. Rye is out of Emory and is one of my favorite RLS specialists - because he HAS RLS. He completely gets what happens to us. If I could see him, I would do it in a heartbeat. Not to say other docs there are not likely excellent. I imagine there could be a bad egg in these places, but imagine it is unlikely. They have to prove they understand it, will prescribe appropriately for it, and know how to handle augmentation, etc.


How can I reach this dr? What department does he/she work out of? Thanks.


I do not know. I imagine a Google search would find him quickly. His name is Dr. David Rye and he does research and teaches at Emory, as well as working as a sleep doc or neuro (cannot remember which). If I remember correctly, the Quality Care Center is at Emory, so, he likely works there. I imagine you will find him quickly.
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.

Ladyslider
Posts: 30
Joined: Wed Sep 06, 2017 3:46 pm

Re: Process for going to a Referral Center

Postby Ladyslider » Sun Oct 22, 2017 8:06 am

Thanks. I found him! He is listed as one of the specialists at the Quality Care Center at Emory. I will give him and call.

ViewsAskew
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Location: Chicago

Re: Process for going to a Referral Center

Postby ViewsAskew » Sun Oct 22, 2017 5:59 pm

Ladyslider wrote:Thanks. I found him! He is listed as one of the specialists at the Quality Care Center at Emory. I will give him and call.


Excellent!

The first time I met him was at the first RLS conference. It was in 2005, I think. He and I were both pacing outside the room where someone was speaking. We chatted for at least 15 minutes. Very personable, pleasant, smart, and nice guy. We chatted about several things, but mostly about RLS and how hard it was to be at a conference or event where the others were not aware of the need to move. (As an aside, it was pretty funny to see 10% of the conference goers, at any given time, wandering around the halls, stretching in the back, or doing the things we do. At the very beginning, they told us to please feel free to move as we needed - what a relief that was!)

His research has focused on the genetics of RLS.

I remember thinking then that I would give an eyetooth to have him as my doc.
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.

Ladyslider
Posts: 30
Joined: Wed Sep 06, 2017 3:46 pm

Re: Process for going to a Referral Center

Postby Ladyslider » Sun Oct 22, 2017 11:38 pm

I will give him a call and get in to see him as soon as possible. This is encouraging. I also pace when attending conferences, church, etc if I'm not medicated. I'll keep you posted:)


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