Suffering for 10+ yrs; need a dr. who understands RLS

[Sprout55]

I am new to the group and look forward to sharing information and learning from this group. I have suffered from RLS for many years. At this time, I only have it in the evenings starting about 5-6 pm and going throughout the night. As with many of you, the list of meds I have tried is long - Requip, Mirapex, Gabapentin, Lyrica, Horizant, etc.
About 2 years ago, I went to Vanderbilt University Sleep Center and was incredibly disappointed by their approach and treatment options (which included just an iron test then a recommendation of magnesium, my iron levels were fine).
I recently began seeing a new neurologist who has once again tested my iron levels (which are fine), told me to stop all b-vitamins, and given me an EMG test (total torture!). He has prescribed Requip .5 mg, Tizanidine, Oxycarbazepine, and Carbidopa-Levodopa. All of these have been prescribed at fairly low doses however I have had multiple side effects including daytime dizziness, nausea, blurred vision, balance issues, and now starting to have restless arms and increasing nervousness. I am a petite woman and have always only needed minimal doses of meds.
I gave him the recent paper from Mayo Clinic on Management of RLS and talked with him candidly about the use of opioids for RLS. He continues to prescribe different combinations of Dopamine antagonists and anti convulsive drugs. I really feel this is taking me down the wrong road based on the most recent RLS literature. One thing that did work completely for me was Tramadol - I received a limited supply of Tramadol after knee surgery. My RLS completely disappeared. It was a wonder drug.
Does anyone know of an RLS doctor who is up to date on the latest protocols for RLS and open to all options being on the table? I don't care what part of the U.S. they are in as I am willing to travel at this point. I am so tired of being a guinea pig with these drugs and just want to prevent unnecessary issues (e.g. augmentation or worse) and get some sleep. Greatly appreciate any insight.

[Rustsmith]

Take a look at the RLS Foundation's website www.rls.org at look at the list of Quality Care Clinics https://www.rls.org/treatment/quality-care-centers. You will find Vanderbilt on the list, but probably a different set of doctors that the one you saw. And don't be surprised if you are told there is a six month (or longer) wait for a new patient appointment. There are too many cases of poorly treated RLS and not enough specialists to go around.

You will probably see or hear about Dr Earley at Johns Hopkins, but don't bother trying to get an appointment with him. He is so well know that Hopkins prohibits him from seeing anyone who is not a resident of Maryland.

[Sprout55]

Thanks for this info, much appreciated.