Restless Legs Syndrome (RLS) Discussion Board

Dr. S. Bhat. He is well versed with RLS/WED and asked all the right questions and I highly reccomend him. He is with JFK Hosp. neuroscience in Edison NJ.
Posted by CMoore - Dec 2012

I saw this today and thought it might help people locate a doctor if they are close to one of these areas. The following physicians were (and maybe are) members of the International RLS Study Group in 2006. I don't see a more current list. They "get" RLS/WED.

Alan Aboaf, MD, Aurora, Colo;
Zakar Ali, MD, Schenectady, NY;
Royal Anspach, MD, Phoenix, Ariz;
Donald Ayers, MD, Lebanon, NH;
Eric Ball, MD, Walla Walla, Wash;
Philip Becker, MD, Plano, Tex;
Richard K. Bogan, MD, Columbia, SC;
John W. Cochran, MD, Alexandria, Va;
Michael G. Connolly, Jr, MD, Birmingham, Ala;
Bruce C. Corser, MD, Cincinnati, Ohio;
John Doggett, MD, Albuquerque, NM;
Karl Doghramji, MD, Philadelphia, Pa;
June M. Fry, MD, PhD, Lafayette Hill, Pa;
James Geyer, MD, Tuscaloosa, Ala;
Jeffrey S. Gitt, DO, Scottsdale, Ariz;
Carl Griffin, MD, Oklahoma City, Okla;
Robert Hart, MD, Elk Grove Village, Ill;
Robert Hauser, MD, Tampa, Fla;
J. Brevard Haynes, MD, Nashville, Tenn;
Bonnie Hersh, MD, Boston, Mass;
John D. Hudson, MD, Austin, Tex;
Stuart Isaacson, MD, Boca Raton, Fla;
David B. Kudrow, MD, Encino, Calif;
Bernard Macik, MD, Largo, Fla;
John Murphy, MD, Danbury, Conn;
Thomas Perkins, MD, Raleigh, NC;
Stephen Poceta, MD, La Jolla, Calif;
George Rederich, MD, Redondo Beach, Calif;
Robert L. Sack, Portland, Ore; J
ohn D. Schaeffer, DO, Henderson, Nev;
Markus H. Schmidt, MD, PhD, Dublin, Ohio;
David Seiden, MD, Pembroke Pines, Fla;
Stephen Sergay, MD, Tampa, Fla;
Kapil Sethi, MD, Augusta, Ga;
Heidi Shale, MD, Berkeley, Calif;
Tanya Simuni, MD, Chicago, Ill;
Malcolm Stewart, MD, Dallas, Tex;
Natividad Stover, MD, Birmingham, Ala;
James Sutton, MD, Oxnard, Calif;
Karen Thomas, DO, Columbus, Ohio;
Richard M. Trosch, MD, Southfield, Mich;
Alberto B. Vasquez, MD, St Petersburg, Fla;
Robert D. Vorona, MD, Norfolk, Va;
Charles Wells, MD, Macon, Ga;
Jan Westerman, MD, Jasper, Ala;
David H. Winslow, MD, Louisville, Ky;
Paul Wylie, MD, Little Rock, Ark;
Ronald Ziman, MD, Northridge, Calif.

These people have also worked with the group, but not on that list, are
Dr Rye, Georgia
Richard Allen, Baltimore
Claudia Trenkwalder
John Winkelman, Boston
Jaques Montplaisir, Montreal
Chirstopher Earley, Baltimore
Michael Silber, Rochester MN
Mark Buchfuhrer, southern CA

I also saw Dr. Walters when he was at the NJ Neuroscience Center. Saw him for nearly 10 years and he was literally a lifesaver for me - not sure how I would have continued without his care. I was heartbroken when he left NJ for Vanderbilt. If you're in that area, don't hesitate to get an appointment with him.

When he left, I saw Dr. Divya Gupta, whom he trained and she was good but not Dr. Walters. I was stable on the Mirapex and Neurontin during that time, so, other than Dr. Gupta insisting I now suffer from sleep apnea (based on an elevated BP whenever I was there - which could have had something to do with waiting for her forEVER, as my BP is always normal at my primary care and always has been), I really only needed maintenance.

I'm now in Northern California and have found Dr. Lydia Wytrzes in Sacramento (Sutter/Sac Sleep Centers). I've seen her twice; the first visit was mostly to get refills for my scripts, which she was happy to provide. She spent a LOT of time with me that first visit, reviewed all my paperwork from the NJNSI and we spent a lot of time talking about my history. But basically, she just did some very basic neuro testing and refilled my scripts.

I just saw her for my 6 month recheck and I still like her. We're changing up some meds (I've gone on the Neupro Patch to try to control daytime breakthrough, which I believe is lifestyle-related, not augmentation with the Mirapex and she concurs), I have some issues/questions/problems at the moment and I'll be curious to see how responsive she is to a telephone consult as I'm not anxious to make that hour and a half drive again so soon (nor can I; I caregive my mom and she has a full plate of appointments next week that would make it very difficult for me to get to Sacramento to see Dr. Wytrzes).

Dr. John Doggett in Albuquerque, New Mexico. At the sleep clinic. He is wonderful. Saved my life, when I was going crazy and no sleep.

That was a great idea to share doctor information. I was pleasantly surprised to see three doctors in Alabama. I am going to Google them to see if they are still in practice here. If there are any changes, I will let you know.

I wanted to add a couple links for anyone having to travel to see a doctor that "gets" us. I used to travel to Baltimore many moons ago using Airlifeline and they are fantastic. One pilot even taught me to fly his plane. It was so fun! You don't have to be "critical" or "terminal" to qualify and there is barely any red tape. For anyone having to travel, but can't afford it, it's definitely worth checking out;

http://www.aircharitynetwork.org/Default.aspx

http://mercymedical.org/request-assistance/

Good luck and happy flying Y'all!

ViewsAskew wrote:Michael G. Connolly, Jr, MD, Birmingham, Ala;
James Geyer, MD, Tuscaloosa, Ala;
Natividad Stover, MD, Birmingham, Ala;
Jan Westerman, MD, Jasper, Ala;

Okay I looked up Michael G. Connolly, Jr, MD first and his office is in the same town I live in. Imagine that! He even takes my insurance which is Medicaid and that sometimes makes it hard to find a doctor too, Anyway, regarding this doctor it shows him being Board Certified in critical care but his office is actually Pulmonary Medicine. Does that go with RLS for some people? How did his name get on this forum? Was this a doctor that registered himself? I will call Monday to ask a few questions His contact info is Pulmonary Medicine Associates 1022 1st St N Suite 501 Alabaster, AL 35007 (205) 664-5935 (Office)

Next comes James Geyer, MD - He has 16 years of experience and practices in Neurology, Clinical Neurophysiology, Sleep Medicine.
100 Rice Mine Loop Rd Suite 301 Tuscaloosa, AL 35406 (205) 345-3881

Natividad Stover, MD - Neurology, Board Certified - Female, Age 52, Graduated 1985, Universidad De Alcala De Henares. Her office is located at; University Alabama Hospital NEU 1720 7th Ave S Suite SC350 Birmingham, AL 35233 (205) 934-0683 (Office)

Jan Westerman, MD - Jan is a "he" and he has a pretty good website describing his practice with all of the contact information;
http://www.sleepfirst.com/index.cfm/fus ... 844614.cfm

So, I'm probably the only one in AL but anyone in surrounding areas could benefit from this information if they are looking for a doctor. I will be calling Dr. Conolly first since he is closest to me and just ask about his involvement with the RLS community.

Dr. Paul Wylie, Little Rock, AR was recommended to me in a private message. I see him on the 28th, if not sooner, and will update then.

onestrapaway wrote:

ViewsAskew wrote:Michael G. Connolly, Jr, MD, Birmingham, Ala;
James Geyer, MD, Tuscaloosa, Ala;
Natividad Stover, MD, Birmingham, Ala;
Jan Westerman, MD, Jasper, Ala;

Anyway, regarding this doctor it shows him being Board Certified in critical care but his office is actually Pulmonary Medicine. Does that go with RLS for some people? How did his name get on this forum? Was this a doctor that registered himself?

These are all doctors who participate (or participated) in the International RLS Study Group. To participate, you have to know a lot about WED- the existing members are very fussy about who they let in, as I understand it. I also imagine that the study group will be changing its name, as they recommended the disease be renamed to Willis-Ekbom Disease.

I'd expect any doctor on this list to understand WED. If they take patients (some are likely researchers), I have no idea if they are nice or have a bedside manner, but would expect them to know all treatment options and be comfortable using any medication.

Per pulmonology, pulmonologists often treat sleep apnea. As such, some of them start to learn about other sleep disorders because they see them in their practice. A few become experts in many sleep disorders. One of the doctors that we take about by name on here, Dr Buchfuhrer (we usually just write Dr. B) is a pulmonologist.

Dr. L Pawluk
University of Alberta Hospital, Edmonton, AB
780 407 6585

This is the doctor I get to see every few years. He knows a lot about RLS/WED and how to treat it, and is very approachable.

The names came from an article I read about new research (and if it really was new research). I've excerpted the names and locations from the text and added below, because these doctors may be available to see patients. They did appear to know what they were talking about in the article.

Dr. Timothy Wilt, core investigator at the Minneapolis VA Health Care System

Dr. Martin Niethammer, a neurologist at the Movement Disorders Center of North Shore-LIJ's Cushing Neuroscience Institute in Manhasset, N.Y.

No idea if she takes patients, but she seems to know what she's talking about.: http://www.huffingtonpost.com/stanford- ... 81000.html

Dr Rachel Corson, Stanford Center for Sleep Science and Medicine, Kentucky

Dr Sethi in Augusta, Georgia. He gets it based on the video I watched.

I really need to find Dr's near toronto. Anybody?

I did a Google search using the following, "toronto RLS". In the results, I came up with the following:

An article in which Dr. Jeffrey Lipsitz, director of the Sleep Disorders Centre of Metropolitan Toronto is mentioned: http://www.canadianliving.com/health/sl ... ndrome.php

A sleep clinic: http://www.sleepontario.com/resources_rls.php

A university sleep center: http://caps.utoronto.ca/Mental-Health/P ... -Sleep.htm

Marta Novak, MD, Toronto Western Hospital, UHN, 399 Bathurst St, Toronto, ON M5T 2S8, Canada. E-mail: novis@hu.inter.net who was part of a study on RLS that was published: http://ndt.oxfordjournals.org/content/20/3/571.long

Abdul Qayyum Rana, MD, of the Parkinson’s Clinic of Eastern Toronto and the Movement Disorders Center in Toronto, Ontario, Canada - who was cited in an article about RLS.

sleep researcher Harvey Moldofsky, M.D., of the University of Toronto - was interviewed in an article


Then I searched using "restless legs syndrome toronto" and added the following:

Canadian Movement Disorder Group may know of where to get help, even though they are in BC: http://www.healthlinkbc.ca/kb/content/m ... 938-ConRes

The authors in this paper: http://link.springer.com/chapter/10.100 ... -9893-4_72 all list affiliations with Toronto. That includes Azmeh Shahid M.D,
Kate Wilkinson Ph.D,
Shai Marcu M.D,
Colin M. Shapiro MBChB., Ph.D., MRCPsych, FRCP(C)

These doctors, Mark Boulos, Brian Murray, Ben Corrigan, Joshua Wortsman, Sandra Black,and Richard Swartz, wrote an article about RLS and Stroke and are in Toronto.

Thank-you very much . I'll call around and see what I can learn. In the meantime if you know or hear from anyone in the area--I really need some personal impressions of the dr's or some way of getting to know who is good or competent, etc. Don't want to pass on anyone and have it turn out to be horrible for them .