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Emory Healthcare in Atlanta - Anyone Use?

Posted: Thu Apr 01, 2021 3:38 pm
by Stainless
Has anyone used this Sleep Center. It’s one of the RLS Foundation’s Quality Care Centers. I’m a day’s drive away but I am desperate. I just don’t want to start from square 1. I’d like to get a hotel, stay a few days, do a sleep study or whatever. I can show up with decades of treatments tried, bloodwork, whatever. My goal would be leave with an IV Iron treatment or some other unknown treatment. I would even go back if it can’t all get done with 1 visit. What do you think. Thx Rick

Re: Emory Healthcare in Atlanta - Anyone Use?

Posted: Thu Apr 01, 2021 9:46 pm
by ViewsAskew
I have not, but I would. Dr. Rye is there - he has spent a lot of time looking at the genetics of this dratted disease. He has RLS/WED! I really liked him when I met him in person at a Foundation event many years ago.

Re: Emory Healthcare in Atlanta - Anyone Use?

Posted: Fri Apr 02, 2021 2:40 am
by Rustsmith
I have not seen Dr Rye in person, but did hear him speak at the patient symposium last fall and have chatted with the Foundation staff about him. I know that he pretty much requires his patients to have their DNA checked and added to his extensive database of RLS related DNA. It is my understanding that his goal is to eventually be able to pair different RLS genes with different meds in the same way that functional medicine works.

I know that he also does other RLS related research, such as looking at the use of buprenorphine for treating RLS.

That said, my impression of him was that he was very knowledgeable but that he also comes across as very outspoken and opinionated. Where most of the RLS experts tend to agree with each other's opinions, he isn't shy about letting everyone know when he disagrees.

I also recently spoke with a woman who went to see him. She came away disappointed and said that he didn't seem interested in hearing about her symptoms and was more interested in telling her about his DNA work.

With all that said, if travel takes me to Atlanta anytime in the near future, I wouldn't hesitate to try to see him for a consult.

Re: Emory Healthcare in Atlanta - Anyone Use?

Posted: Fri Apr 02, 2021 1:43 pm
by Stainless
Are the Foundation Quality Care Centers doing IV Iron? Does anyone know of a clinic near Florida that does?

My neurologist literally threw up his hands yesterday and then prescribed a "sleeping pill" Flurazepam. I thought that term literally died in 1960. I get home and research it and find it is another benzodiazepine like the clonazepam I'm on. But he can't increase clonazepam over 2 mg. I think this is the road to hell.

I'm not complaining, he's a nice guy and will do anything in his power to help but he has run out of options. He said I should seek out experts but has no clue on how to pursue more specialised treatment. I see another neurologist in a few weeks to get a second opinion especially about the Flurazepambut. I have no high hopes. I, like many of you, hope IV Iron is the answer. Probably not for many but some may get lucky. I've been very lucky in every other part of me life. Here's to luck.

Re: Emory Healthcare in Atlanta - Anyone Use?

Posted: Fri Apr 02, 2021 2:47 pm
by Rustsmith
Usually, the QCC itself does not give IV iron but they have a hematologist nearby that does. But IV iron is not part of the QCC certification requirements like opioids, so I cannot say that they all have access. The one exception to all this is Johns Hopkins. Dr Earley had so many problems finding a hematologist to do them that he got certified himself, so the Hopkins RLS clinic does do them.

Re: Emory Healthcare in Atlanta - Anyone Use?

Posted: Sat Apr 03, 2021 3:47 pm
by Stainless
That’s good to know. A trip to Maryland might be interesting. Never been there. A good time to boycott Atlanta. Thanks Rust.

Re: Emory Healthcare in Atlanta - Anyone Use?

Posted: Sat Apr 03, 2021 4:06 pm
by Rustsmith
A trip to Maryland might be interesting.
The one thing to let you know is that you would not see Dr Earley himself. He was in such demand that the hospital decreed that he could only see Maryland residents and his former patients. But there are plenty of other doctors in their RLS unit that Doctors Earley and Allen trained.

Re: Emory Healthcare in Atlanta - Anyone Use?

Posted: Sun Apr 11, 2021 2:35 pm
by SleepyBhamster
Sorry I only just saw this post. I am the Disappointed Woman mentioned above. I went to see Dr. Rye 6 months ago. But the thing that started the visit out awkwardly is that I had just completed iron infusions here in Birmingham, AL, and my symptoms were already nearly entirely gone. I had made the appt with Dr. Rye perhaps a month earlier because I was hitting brick walls trying to get help here. But then Dr. Buchfuhrer replied to my desperate email, wrote out what he would do to treat me, I gave the email to my rheumatologist, and he ordered the infusions immediately.

I decided to keep the appointment with Dr. Rye just to make contact and have an RLS expert who I could go forward with in the future. But as described above, he spent most of the appt talking about his own work and other studies and asking very little about me. But he did have pages and pages of forms for me to fill out that were all related to his DNA studies and yes, he did draw blood for DNA testing.

He didn't want to do anything for me until I had had a sleep study even though I told him I was 100% certain I would not be able to sleep during a study. And even though I was overjoyed that the iron infusions had stopped my symptoms, he was not at all keen on iron as a treatment and felt I would soon be coming to him for medication (he did prescribe Sinemet and Ambien for me which I haven't used at all).

I have to run right now. But I'm not saying he's a bad doctor. I'm sure he's excellent. He says he does order infusions for a few of his patients. BUT the thing that has turned me off him even more is that I was to see him April 16 for a follow-up and a for-sure sleep study. (He let me get away without one for 6 months, but that was his limit.) I used the Emory patient portal to ask him once again why I would need one if I still don't have any symptoms and it would be a hardship for us to travel there just to get one. Long story short, he never responded--even though his staff kept telling me he would. I wrote 3 times over 3 weeks and he never replied, so I cancelled the appt.

I wonder if he 1) lost interest in me because I wasn't having symptoms and didn't want a sleep study or 2) was he trying to teach me some kind of lesson like "If you don't comply, I won't respond"? or 3) is he just SO busy he can't respond to anyone? I don't know. But if I do have symptoms again, I will request Dr. Trotti or someone else there.

Again, this isn't to say he's a bad doctor. If you have a lot of juicy symptoms, you may be of more interest to him. But he's definitely going to talk DNA studies!


Re: Emory Healthcare in Atlanta - Anyone Use?

Posted: Wed Apr 14, 2021 12:09 am
by Stainless
Sleepy, Thx for the response. Can you tell us about your IV Iron experience? Did you go from severe RLS / PLM to mild or none? How many treatments, how long until results. Your input would be great. Rick