Referred to Stanford

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
CarlaB
Posts: 20
Joined: Fri Dec 20, 2013 8:56 pm

Referred to Stanford

Postby CarlaB » Sat Jul 30, 2016 4:56 pm

Hello, I have severe RLS and my primary doctor referred me to Stanford. Just received a call and have my first appointment, though it is with the Movement Disorder Clinic and not the Sleep Clinic. Do both clinics work together in patient care? Wondering if anyone else has been directed to the Movement Disorder Clinic, rather than the Sleep Clinic?

Thank you for any feedback.

stjohnh
Posts: 311
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Referred to Stanford

Postby stjohnh » Sat Jul 30, 2016 7:16 pm

I haven't, but do know Stanford medicine considers RLS as a Movement Disorder rather than a sleep disorder. I live 2 miles from Stanford.
Blessings,
Holland

ViewsAskew
Moderator
Posts: 14650
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Referred to Stanford

Postby ViewsAskew » Sat Jul 30, 2016 7:30 pm

Hmmm - I only know that the Sleep Center is the one that is designated a Quality Care Center by the RLS Foundation. I'd write to Dr. Buchfuhrer - he is on staff, if only one or two days a month - and he would know who is qualified and which is the best place to be. His email is somno@verizon.net. Jullianne Winkleman is on staff there, also, and she has been involved in a tremendous amount of RLS research over the last ten years.
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.

ViewsAskew
Moderator
Posts: 14650
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Referred to Stanford

Postby ViewsAskew » Sat Jul 30, 2016 7:38 pm

Ah - I just figured out how to use their site to find RLS doctors specifically. Here is who is listed - not sure what part of Stanford they are associated with.

Mark Buchfuhrer, MD
Clete A. Kushida, MD, PhD, FAASM
Mitchell Miglis, MD
Kathleen Poston, MD, MS
Logan Schneider, MD
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.

CarlaB
Posts: 20
Joined: Fri Dec 20, 2013 8:56 pm

Re: Referred to Stanford

Postby CarlaB » Sat Jul 30, 2016 8:19 pm

My case was accepted to the Movement Clinic side of things to a neurologist in that Clinic. Will ask at my first appointment if they partner with the Sleep Clinic, since that is who I thought my paperwork went to. I will keep this first appointment and see if they suggest anything to improve my quality of life.

Btw, is Dr. B ok with potential patients emailing him? Thanks for all the responses.

Rustsmith
Moderator
Posts: 2463
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Referred to Stanford

Postby Rustsmith » Sat Jul 30, 2016 9:35 pm

CarlaB, although it isn't Stanford, my experience at the University of Colorado-Denver might be an indication of what you could expect. My referral was to the Movement Disorder Group within the Department of Neurology. The doctor that I was assigned is listed in the "Consultative Neurology" group. That group is supposed to get individuals with general neurology issues and then either send them back to the referring physician with a suggested treatment or send them along to one of the specialist groups. It took me four months to get in, so I could just foresee another 4 months to actually get to the RLS specialists. Well, as it turns out, although she is assigned to the Consultative group, she splits most of her time working in either the Sleep Medicine froup of the and Movement Disorders group. So she was the perfect physician to handle my RLS. As an added bonus, we also hit it off very well from a personality match standpoint.

So, just because the doctor that you have initially been assigned reports to the Sleep Clinic, that does not mean that he/she does not also work with the Movement Disorder group. Sometimes is it simply a matter of leveling the patient load between the various doctors and when you get a disease like RLS that straddles the organizational boundary, the senior physician/boss who divvies up the work load may simply be sending you to a sleep doctor with experience treating RLS because the movement disorder staff are all currently overloaded with patients with things like Parkinson's, Tourette's, etc.
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.

CarlaB
Posts: 20
Joined: Fri Dec 20, 2013 8:56 pm

Re: Referred to Stanford

Postby CarlaB » Sat Jul 30, 2016 10:09 pm

Thanks, Steve, for your insight. I thought I was referred to the Sleep Clinic, which is listed with the RLS.org Quality Care distinction, however, my case was assigned to a Neurologist with the Movement Clinic. The doctor's CV indicates he specializes in Parkinson's and Huntington's, however, he is indeed a movement disorder specialist and RLS qualifies as a movement disorder. Since I got an appointment relatively quick, I'm taking it. As your experience indicates, it may be a very positive appointment with someone who knows how to treat severe RLS and sleep issues. Crossing my fingers, at least.

ViewsAskew
Moderator
Posts: 14650
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Referred to Stanford

Postby ViewsAskew » Sun Jul 31, 2016 3:41 am

Let us know how it works out, CarlaB.
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.

CarlaB
Posts: 20
Joined: Fri Dec 20, 2013 8:56 pm

Re: Referred to Stanford

Postby CarlaB » Sun Jul 31, 2016 2:12 pm

Will do, Ann! My appointment is Tuesday morning. I'm keeping a sleep/RLS diary to show the doctor in case that will help. Appreciate talking to others who understand how difficult it is to deal with this horrible disorder, especially when it occurs 7 days a week and is not controlled.

Rustsmith
Moderator
Posts: 2463
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Referred to Stanford

Postby Rustsmith » Sun Jul 31, 2016 3:54 pm

Good luck CarlaB, I really hope this works out for you and that you are as happy with the result as I have been with the doctors that I have seen at two different facilities that are somewhat similar to Stanford.
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.

CarlaB
Posts: 20
Joined: Fri Dec 20, 2013 8:56 pm

Re: Referred to Stanford

Postby CarlaB » Wed Aug 03, 2016 4:04 am

Thought I would share about my visit today. I brought along my RLS symptom and Sleep Diary. The doctor was very kind, good communication skills, and confirmed what I had surmised, that I had augmentation with carbidopa-levodopa after I first sought treatment years ago, then horrible augmentation with pramipexole (former neurologist just keep raising the dose until I was on 5 .25mg tablets) and sleep issues started. Now on ropinirole, I am having augmentation once again. My RLS just keeps getting worse with each DA I take. This doctor did send me up to labs for detailed iron studies, he is the first doctor to do so.

New doctor did add in tramadol, so will see if that helps at all. Talked about options for moving forward with finding the right combination of meds that will help me with my severe RLS symptoms and sleep issues.

Off to do more research on augmentation and to watch the webinar. Have the Clinical Handbook, so that will be my first stop. Thanks for listening and any feedback.

ViewsAskew
Moderator
Posts: 14650
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Referred to Stanford

Postby ViewsAskew » Wed Aug 03, 2016 7:27 am

Sounds promising. If you have any questions, let us know. Many of us have dealt with augmentation. There are a few ways to approach it...
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
Moderator
Posts: 2463
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Referred to Stanford

Postby Rustsmith » Wed Aug 03, 2016 10:17 am

Glad to hear that the doctor appears to be working out. Take a look through the information in the Augmentation forum. There is a lot of good information in the threads that you will find there.

And as Ann said, please ask any questions that you have after doing your research. Almost everyone here has had to deal with augmentation in the past. There are a number of ways to address handling it and the Tramadol that you are going to be getting could be the first step.
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.

CarlaB
Posts: 20
Joined: Fri Dec 20, 2013 8:56 pm

Re: Referred to Stanford

Postby CarlaB » Wed Aug 03, 2016 3:07 pm

Steve and Ann, After reading many of the papers, and wonderful links about augmentation here on RLS.org, I understand more about how the Stanford doctor is approaching my case. I am now splitting the dose on the ropinirole, and also experimenting with a lowered level. The doc and I talked about what to try if that doesn't work (adding in lyrica,and other options) I did read that there is an augmentation risk with Tramadol, may I ask what that looks like? If Tramadol is not effective, we talked about the use of other low potency opioids.

I am very curious about how my ferritin/iron levels look. The doctor also is testing a few other levels- I think B6, B12 and magnesium, too. I like the ability these days to go online and read the lab results for myself.

ViewsAskew
Moderator
Posts: 14650
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Referred to Stanford

Postby ViewsAskew » Thu Aug 04, 2016 1:40 am

I've never talked to anyone with augmentation from tramadol - at least not that I can remember!
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.


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 1 guest