Emory Healthcare in Atlanta - Anyone Use?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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Stainless
Posts: 192
Joined: Tue Dec 01, 2015 9:30 pm

Emory Healthcare in Atlanta - Anyone Use?

Post 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

ViewsAskew
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Re: Emory Healthcare in Atlanta - Anyone Use?

Post 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.
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: Emory Healthcare in Atlanta - Anyone Use?

Post 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.
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.

Stainless
Posts: 192
Joined: Tue Dec 01, 2015 9:30 pm

Re: Emory Healthcare in Atlanta - Anyone Use?

Post 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.

Rustsmith
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Re: Emory Healthcare in Atlanta - Anyone Use?

Post 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.
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.

Stainless
Posts: 192
Joined: Tue Dec 01, 2015 9:30 pm

Re: Emory Healthcare in Atlanta - Anyone Use?

Post by Stainless »

That’s good to know. A trip to Maryland might be interesting. Never been there. Thanks Rust.

Edited by Moderators 2021/05/09

Rustsmith
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Re: Emory Healthcare in Atlanta - Anyone Use?

Post 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.
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.

SleepyBhamster
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Location: Birmingham, Alabama, USA

Re: Emory Healthcare in Atlanta - Anyone Use?

Post 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!

Sleepy

Stainless
Posts: 192
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Re: Emory Healthcare in Atlanta - Anyone Use?

Post 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

SleepyBhamster
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Location: Birmingham, Alabama, USA

Re: Emory Healthcare in Atlanta - Anyone Use?

Post by SleepyBhamster »

So sorry that I missed your question, Rick! I must do something to get notifications.

I first want to correct what I said about his wanting a sleep study. Ann, the moderator who posted above, said that he has never insisted on one for her, and that made me remember that he was certain I had something else going on like sleep apnea. So he was probably justified in wanting that. But I had just had a dental device made that does help me not to snore. Hadn't had much chance to use it when I saw Dr. Rye.

For the infusions, I've only had one treatment of two doses of Injectafer. It worked so quickly that I declared then that I never would have quibbled about the high price of I had known how well it would work.

I don't have time now to give any more details except that my ferritin was at 30 before the infusions. Unfortunately my rheumatologist didn't think it worth testing again to see what it was afterwards. But he will do it around August, which about 10 months from the infusions.

Talk to you later!

SleepyBhamster
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Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

Re: Emory Healthcare in Atlanta - Anyone Use?

Post by SleepyBhamster »

Have a little more time to write now: I have not had severe RLS. It really only became an issue in the past 2-3 years when I tried to go cold turkey off klonopin (don't anyone do it!). After all the other horrible side effects left me, I was still left with restless legs at night. Early last year a doc prescribed Requip for me. It was wonderful for a few months, then things got worse. That's when I discovered the RLS Foundation and got myself educated. I followed the instructions for the John Hopkins drug holiday which was pretty awful as stated. I was getting pretty desperate, not able to sleep for days at a time when some lovely person here gave me Dr. Buchfuhrer's contact info. I told him I was getting nowhere trying to get a doctor to prescribe iron for me. He wrote a nice email, detailing what he would suggest, plus attaching a couple studies. My very very good rheumatologist read the letter, read the studies, looked at the RLS.org literature and immediately ordered Injectafer infusions for me.

I was better within a couple weeks. I only went to see Dr. Rye because I had already made the appt with him and wasn't at all sure how well the iron would work.

I am only now starting to feel hints of RLS again--but I am going through a stressful time (allergic reaction to antibiotics) so am not at all sure whether this is the iron wearing off or if it's just the high anxiety I'm going through.

Hope that helps!

Sleepy

badnights
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Re: Emory Healthcare in Atlanta - Anyone Use?

Post by badnights »

I am only now starting to feel hints of RLS again--but I am going through a stressful time (allergic reaction to antibiotics) so am not at all sure whether this is the iron wearing off or if it's just the high anxiety I'm going through.
Just a headsup, it's probably the iron wearing off, it's been at least 6 months. Time is now to start arranging another infusion - first step will probably be to get your bloodwork repeated, and give the numbers to your doctor (or Dr B). Since it might take a while to arrange, you might want to start before your symptoms get any worse.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Stainless
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Re: Emory Healthcare in Atlanta - Anyone Use?

Post by Stainless »

Sleep, thx for the response. Sounds like we have ended up in the same place by different paths.

I think getting off clonazepam compounded my issues resulting in getting back on and adding Lyrica. I think I still have side effects more than four years later one being my RLS is more painful.

My plan is to go to John Hopkins and see what they say. Hopefully I’m a candidate for IV Iron. I need to get that in motion when I get back form a commitment next month. Rick

SleepyBhamster
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Location: Birmingham, Alabama, USA

Re: Emory Healthcare in Atlanta - Anyone Use?

Post by SleepyBhamster »

Good luck with that, Rick. And thanks, Beth, for the head's up on the infusions. I've been having a week from hell with amoxicillin rash head-to-toe, so will make arrangements for a new blood test once I come out of this.

badnights
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Re: Emory Healthcare in Atlanta - Anyone Use?

Post by badnights »

SleepyBhamster wrote:
Wed Apr 28, 2021 1:44 pm
Good luck with that, Rick. And thanks, Beth, for the head's up on the infusions. I've been having a week from hell with amoxicillin rash head-to-toe, so will make arrangements for a new blood test once I come out of this.
yikes, that sounds dreadful! Good luck
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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