Hi friend zombiewoof:

My doctor-- only does telemedicine for patients in Michigan, Ohio and Florida (states where he is licensed). No office. Over the computer.

He also won't take insurance. Initially, that put me off (worried that meant he wanted to fleece me), but actually he doesn't over-charge and giving me back my life (for me) is worth paying out of pocket.

I think about $450 for the initial evaluation and $125 per month (not per contact, for the entire month). (You can quit the monthly anytime).

I travel to Ohio to telemedicine with him once a year (from a motel room) and have to pick up my prescription in Ohio every 90 days. (It's 3 hours round trip for me, but I also get to go to Ikea : )

He wasn't "into" perpetuating having me under his care (for the money). Once I was stable on medication, he would have been happy to turn me back over to my primary doctor to have her write the medication prescription instead--he suggested this.

I just feel safer with him as my RLS doctor--I never want to return to the RLS hell I was in.

In addition, I can email or message or telephone him in between, if I have a question.

Recently, he advised me to take my medication a little closer to bedtime. He is also a sleep expert. It was a good suggestion.

He co-wrote the RLS guidelines with Dr Winkleman (who is at Mass General in Boston--but it is impossible to get an appointment with--I tried once).

My doctor is J Andrew Berkowski, MD. He's a member of the RLS Foundation advisory board. I first saw him in 2021 when he was working at Cleveland Clinic. Smart as a whip and his whole practice is RLS. He is also compassionate--a truly kind man. He understands how difficult RLS is to live with. (I believe his undergraduate degree was a co-major of Religious Studies AND Biochemistry.)

Not helpful information for you if you don't live in (or can travel conveniently to) any of the three states where he is licensed.

Unless you could travel to one of those place for just the evaluation and have your own doctor write prescriptions for you (assuming to get you off Requip, it would be a process of different drugs --not just one prescription and out the door). The problem with not being physically in Michigan, Ohio or Florida is Dr Berkowski can only write prescriptions in those states.

If it isn't too much of an invasion for me to ask, where do you live? I can ask Dr Berkowski for a recommendation of an RLS doctor closer to you, if you can't see him. He isn't the only RLS expert in the country --and he is acquainted with the other "good" RLS doctors who know how to treat RLS effectively.

Also, zombiewoof, your descriptions of suffering take me right back to my own breaking point in the summer of 2021, while I was waiting to get in to see Dr Berkowski. I wasn't quite ready to car-pool with you to Oregon, but if I hadn't gotten his help, I might have been heading that way. When I realized death was better than the suffering I underwent, I cried most of the night and all the next day. Thinking of how I felt then terrifies me, now that I'm "better." I never want to go back to those feelings.

The other thing, zombiewoof, you need to get some Nidra bands. I just read and replied to someone writing about them on another thread of this Mayo board. Did you see it? I got mine in April. After a while of using them, I swear to you I started to have nights with NO symptoms at all. Plus, the bands help when I do have symptoms (unless my symptoms are very severe). My medicare and supplemental paid for them 100%. Google Noctrix Company (in California) and Nidra. Call or email them. That is what I did. Go to YouTube and search the term Nidra there and watch some of their videos. I swear it is not a gimmick. It is a well-designed medical device that you have to have a prescription to get. I googled the people who started the company---all major brains. The first few months of use, I had someone from the company email weekly to be sure I knew how to use it and any questions I had were answered. Nidra bands really, really will help. (They don't replace medication, however. But, as an addition to medication, they do quiet frequency of symptoms)

Noctrix has a list of RLS doctors (on their website) who can prescribe Nidra for you, if your doctor can't. (For insurance to pay, the prescription needs to include the "right" description of your medical need). The doctors on the Noctrix list know how to write the prescription.

But, to get your medication issue "fixed" I don't know that those doctors are "expert" enough. I believe you need someone who has the far end of expertise treating RLS--someone as good as my Dr Berkowski.

As far as getting off Requip, of course that is a good idea. Best, I think, if you can do this with expert medical direction. I know Dr Berkowski has worked with patients who augmented and needed to be switched to different medication. He described this to me as a "process"---not like you can switch medications and go blithely off into the sunset immediately. There may need to be some tinkering as well as time for your brain to readjust.

It is the right way forward.

Also, experts like Dr Berkowski know what other medications make RLS worse---something a non-expert doesn't have a clue about.

I take a low dose of buprenorphine (a couple hours before bedtime) and it is the only thing that had helped me, medication-wise. It's like methadone--usually prescribed for someone with an abuse problem. It's a mild opiate. Causes some constipation. Changed my life (for the better). Gave me back a life.

You are doing the right thing advocating for yourself. It's what I did.

But, dealing with medical-stuff takes time. Getting an appointment with the right doctor can take time. It takes time to get a Nidra delivered and activated.

So, you need to get busy and not delay. You can dig yourself out of that hell.

Please let me know your location and I will help identify RLS specialist(s) for you.