List of certified RLS Care Centers in the US, Austria, and Switzerland

[TeddiJ]

These are certified by RLS.org. I have been struggling to find opioid help so I thought this might be helpful for many of you!

Also, there is a list of doctors under the US care centers, so you know which doctors to target.

rls.org/treatment/quality-c...

[SueJohnson]

Also if you click on Find A Health Care Provider on that page, you can search for doctors who others have found helpful.

[TeddiJ in reply to SueJohnson]

Very true-thank you. The reason I didn't include that is because those provider lists can be dicey. For example, a list for my state includes very few doctors. One no longer takes new patients. One has a phone number that doesn't work. One has a VM and they don't seem to answer or call back.

WORST: One will no longer give me an opioid prescription and has left me totally hanging out to dry.

Bottom line, in my case: Most are difficult to get ahold of, especially to find out if they do opioid therapy.

The list of centers link I posted actually gives you names of several doctors in each center and so it is much less limiting. Plus, a "center" means that they all are on board and can help! WOW!

[halperinchen in reply to TeddiJ]

Hi, TeddiJ, I can't thank you enough for this, I have been worrying about this issue for some time until I see your post. Yes, this list is a real life saver for all of us when comes to a time we need to find a new doctor who is willing to prescribe opioid. Thanks, you have done a great service at this forum.

[TeddiJ in reply to halperinchen]

I can't tell you how nice that is to hear. I really have been through hell with this opioid issue and getting any help these last months! I am still in it, as I can't get a new appt. before my methadone prescription runs out. Karla from RLS.org told me that my current doctor absolutely must continue my care until I get in elsewhere. That he cannot leave me hanging to go through withdrawal or I should report him. But, I won't know if he will comply until the month is up, of course. I also bought Kratom on the advice of posters here. As a backup. Haven't yet tried it.

Knowing I can keep some folks from having to go through all the same anxiety and endless research certainly helps me, so thank you!

I knew about rls/org, of course, but I had only gone to the state providers section of the site prior to today! And that experience is the one I described in the answer to Sue.

For this post, I got a tip from a webinar that I listened to last week-and it was VERY boring and full of info I already knew. I wanted to hang up but I was waiting for them to answer a question I had posted. (they didn't answer it, of course!)

But, this one great tip came out of it!

[SueJohnson in reply to TeddiJ]

That is very discouraging. I would advise Karla of this so she can at least take them off the list. These doctors are recommended by people who have found them to be helpful in treating RLS. I recommended my doctor although he is not yet listed, and since I don't need opioids I don't know if he would prescribe them. I must admit though before I got him I tried to get a doctor through the Johns Hopkins Center of Care and was told they weren't taking new patients.

[TeddiJ in reply to SueJohnson]

Yes, that is key for many of us: do they know about the opioid research and do they prescribe opioids? The doctors listed by state may or may not-they are NOT vetted by RLS.org.

The care centers are certified by RLS.org, so I believe that makes a huge difference. That is why I did not point out the doctors listed by state, as many did for me over time. I learned the hard way that the list is by no means up-to-date and it can be a very frustrating road.

There isn't even one doctor listed in a city of 3 million people! Nor is there a care center listed for Chicago, where there are at least 3 large research hospitals and many more hospitals/medical centers.

Karla actually called me directly and she is aware of my struggles. However, I don't think she controls that list or how people recommend those on the list. But, at least she now knows of my experience with that particular list/section of the site.

Thanks, Sue!

[SueJohnson in reply to TeddiJ]

Lets hope more and more Care Centers will be added in the near future since you are so right about them being the best and knowing about opioids which are needed by so many.

[TeddiJ in reply to SueJohnson]

Yes, and I also believe that even if you don't need an opioid, you would want a doctor that knows every bit of new research.

[Jumpey in reply to SueJohnson]

Does that cover doctors outside of the States?

[SueJohnson in reply to Jumpey]

The Care Center lists one in Switzerland and one in Austria, but the list of doctors only has US ones.

[Jumpey in reply to SueJohnson]

Yes that's what I found.

[TeddiJ in reply to Jumpey]

Yes, I wonder why there are no doctors listed under those centers? But, at least there are a couple centers in Europe?! I have to travel pretty far to get to one in the US, as well. Not ideal in either country, for sure.

[Joolsg]

Thanks Teddi.It is extremely embarrassing that this is a UK website and there isn't a single centre anywhere in the UK.

We have about 4 or 5 UK neurologists who say they know about RLS but they are still prescribing dopamine agonists and don't accept the link with iron so do not offer iron infusions.

We still have such a long way to go....

[Jumpey in reply to Joolsg]

I agree it is so disappointing. I'm surprised that they don't agree there is a link with iron.But not at all surprised about the infusions.

[TeddiJ in reply to Joolsg]

Hi! That is indeed incredible. And of course that is still true for most of the US. Yes, a very long way to go.

[scifire in reply to Joolsg]

I'm amazed that there's no center in New York State. I have to go to Yale in Connecticut and they stopped doing televisits so I am limited to phone call visits or using the patient portal only. I have contacted a neurologist in Albany and have an appointment with her later this month so we will see how that goes.

[coldfeet7]

I joined rls.org and used the list to find Emory, in Atlanta. When I checked user reviews on different sites, many too many were complaining with how the practice runs. The Dr's they said were good, but the practice management was a nightmare. The reviews seemed credible (not just persons that sound like they complain all the time).

It seems too many Dr's don't realize that how the patient experiences scheduling, call backs, etc. can make or break their business, especially in the era of online reviews.

If I call a place and the staff is friendly, returns calls in a timely fashion, is responsive to messages on a portal and the hold times aren't ridiculous then I will be a repeat customer and if it is a hot mess before I can even get to see the Dr. I move on.

[TeddiJ in reply to coldfeet7]

I hear you-I have had so much stress associated with those very issues recently. Just what one doesn't need when they are already dealing with a health issue.

[coldfeet7]

The hardest part as a business person is to see you and your company as your customer sees you! Instead, humans tend to think of how things impact us and how we can make thing easier for us. Walk a mile in your customer's shoes. (Hopefully we can also walk a mile in their shoes and cut them so slack from time to time.. ;-).