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Re: Who is your favorite doctor?

Posted: Fri Aug 29, 2014 5:28 pm
by ViewsAskew
issuesman50 wrote:For those of you in the Chicago area, and specifically western suburbs, I finally found a Doctor who knows what she is doing. I highly recommend Dr. Kelly Gill of the Chicago Sleep Group with offices in Winfield and Naperville. She is a neurologist with research experience in WED. I have severe symptoms that other Drs have not been able to get under control. She has figured out a regime that currently has reduced my severe daily symptoms to occasional very mild symptoms that do not affect my work or sleep. She is great to work with, and most importantly knows enough to figure out how to get the WED under control. It feels great to finally have a Dr who knows what she is doing.


I'd easily travel from Chicago to see Dr Gill considering I travel to see Dr Buchfuhrer in California now. Do you know if Dr Gill has any experience using opioids? So far, every doctor I've seen in this area is terrified of opioids. Since I've been through 15-20 meds in different combos and fail most because of side effects, opioids are my only current option.

EDIT - Added the following:
My husband saw Dr Gill today for apnea. He asked her about me, while he was there. She refused to prescribe methadone, though is sending home a list of other drugs that she is willing to work with, including some moderate opioids. She said she has no experience with people with severe symptoms.

So, glad I didn't make an appointment. I've seen 10-15 doctors like her. Amazing how hard this can be. And, you'd think I'd stop getting my hopes up. Alas, didn't learn!

When he came home, the list of items she had included Sinemet (!), gabapentin, pregabalin, and gabapentin encarbil. Why in the world would she think I ended up on methadone without having tried these things???? Who knows. I'm sure my hubby didn't mention many of the details or things like augmentation. But, I am glad I didn't go there. I'm sure she's fine for cases that respond well to the primary drugs.

Re: WED/RLS doctors

Posted: Tue Sep 02, 2014 6:57 pm
by fek67
I am looking for a WED/RLS doctor who is located in Georgia. When looking at a previous thread, I found that a Dr. Rye, GA was listed. Just wondering if this is Dr. David Rye, a neurologist at Emory University in Atlanta? Has anyone seen this doctor for RLS?

Re: WED/RLS doctors

Posted: Wed Sep 03, 2014 3:33 am
by ViewsAskew
fek67 wrote:I am looking for a WED/RLS doctor who is located in Georgia. When looking at a previous thread, I found that a Dr. Rye, GA was listed. Just wondering if this is Dr. David Rye, a neurologist at Emory University in Atlanta? Has anyone seen this doctor for RLS?


Yes, it is David Rye. I've met him, but have not had him as my doctor. I like him quite a bit and would absolutely see him. He has WED! We presented at a conference together. I remember the two of us pacing the hallway together at 10 AM :-). He chatted with me as if I was an old friend and we'd never met before. Later, we had coffee together and talked about his research.

I can't think of a doctor I'd want more - he gets the disease because he has it, he has been on the Foundation's medical advisory panel (as have many others), and is doing research to try and figure it out. He's a hero in my book.

Re: WED/RLS Recommended doctors

Posted: Mon Sep 08, 2014 10:31 pm
by kathleenbutts
Looking for a WED doctor in Idaho or WA or OR or Utah.

Would greatly appreciate any recommendations. I live in Boise, but would travel if I had to.

Re: Who is your favorite doctor?

Posted: Fri Oct 03, 2014 4:43 pm
by crl363
Dr. John W. Winkelman MD, PhD in Boston. A true RLS specialist. Has done extensive research on RLS. Served on the Medical Advisory Board of the Restless Legs Syndrome Foundation. Collaborated on quite a few papers with Dr. Allen at Johns Hopkins.

Who is your favorite WED/RLS doctor?

Posted: Thu Nov 06, 2014 1:48 am
by badnights
I have merged two topics here, one that Ann had started long ago and one that I had started more recently.

Re: WED/RLS Recommended doctors

Posted: Thu Jan 08, 2015 2:06 am
by ViewsAskew
There are now sleep centers recognized for expertise in RLS/WED, as Beth has mentioned before.

Stanford is the latest: ttp://med.stanford.edu/news/all-news/20 ... drome.html

Curently recognized are:

Johns Hopkins
Sleep Center at Mayo Clinic - many doctors there, including Dr SIlber
U of Texas Medical Branch - Dr Ondo
Innsbruck Medical Center in Austria
Stanford Sleep Medicine Center

Let's hope that this year doubles the list!

Re: WED/RLS Recommended doctors

Posted: Fri Jan 09, 2015 7:51 am
by badnights
I like to see that list growing. This disease is being taken seriously! And you can bet on getting good care at those centers - they have to show that they have experience and expertise in refractory WED/RLS, so you won't end up seeing a doctor who said "I'm great, I treat RLS" when actually he knows nothing.

Re: WED/RLS doctors

Posted: Fri Jan 09, 2015 12:00 pm
by Orrel
fek67 wrote:I am looking for a WED/RLS doctor who is located in Georgia. When looking at a previous thread, I found that a Dr. Rye, GA was listed. Just wondering if this is Dr. David Rye, a neurologist at Emory University in Atlanta? Has anyone seen this doctor for RLS?



I just came across this posting. You might check out Dr. Lynn Marie Trotti in Atlanta. She is a new member of the WED Foundation's Medical Advisory
Board and is an Assistant Professor of Neurology at Emory. While I don't know her personally, I have talked to her on the phone about my WED and she
was very helpful. My wife and I have been friends of her parents for many years.

Re: WED/RLS Recommended doctors

Posted: Sat Jan 10, 2015 6:53 am
by ViewsAskew
YAY! And, Orrel, you remind all of us of something I forget - to see who's on the WED Medical Advisory Board. Drs Allen, Rye, Earley, Buchfuhrer, Ondo, and others have all been on there and we mention them all the time. But, here are some new doctors that I am not aware of.

Re: WED/RLS Recommended doctors

Posted: Fri Jun 12, 2015 5:06 pm
by atule1969
I am considering traveling from Nashville to Atlanta to see Dr Rye. I called his office and he requests that medical records be sent to him before any appointments are made. The cost is $200 for his review. I am sure the appointment time and any tests performed as well as food and lodging will run into a lot of money. But, I am at a point that I need a strong doctor and they say, You get what you pay for".

Anyone have knowledge about any good doctors in Middle Tennessee?

Re: WED/RLS Recommended doctors

Posted: Fri Jun 12, 2015 10:05 pm
by ViewsAskew
I wish I did. As you noted, it's likely not going to be cheap to travel.

Re: WED/RLS Recommended doctors

Posted: Thu Aug 06, 2015 12:53 am
by edelman2
Hi,

I'm in NYC. Can anyone recommend a doctor here? thank you

edelman2

Re: WED/RLS Recommended doctors

Posted: Sun Sep 06, 2015 12:19 am
by edelman2
do you have any doctors in nyc?

Re: WED/RLS Recommended doctors

Posted: Sun Sep 06, 2015 4:32 am
by ViewsAskew
edelman2 - people seem reluctant to post about good docs - and there aren't that many to begin with. If you have not, do try using the search function - top right of the page. Search for York, Manhattan, or NYC - if you add 'New" to the search, it will find too many things. I would do it for you but I've taken my nightly meds and can barely keep my eyes open. Good luck.