Good WED/RLS doctor in the Chicago Area

[Valthinking]

Does anyone have a good sleep doctor in the Chicago area? Someone with experience in Intractable or Refractory RLS? I think they must be pretty rare; I'm in the Northshore system. All the sleep doctors say they manage RLS, but when I go to see them, they can only handle people with mild cases, not people like me with 'Familial Refractory' RLS.

I'd be grateful! Will also travel if need be!

[Polar Bear]

Not specifically a sleep doctor but I know of one member who came from the Chicago area and found it so impossible to find good RLS treatment that they moved to California. If you can find your way to one of the RLS Quality Care Centres you can be assured of a doctor who understands. Unfortunately there is a waiting time of several months. There are two in California, Stanford and San Diego. If you Google RLS Quality Care Centres you will find their locations throughout the USA.

[Valthinking]

Oh boy. Thanks. I did have a video conference with a Dr. Silber from the Mayo Clinic in Minnesota over a year ago. My healthcare system claims to 'partner' with the Mayo Clinic. But my neurologist has yet to put Dr. Silber's plan into play. He did prescribe Oxycodone after some arm-twisting. The thing is, I feel dizzy and nauseated all day. My neurologist says it's from poor sleep for about two years and that it will get better. I don't really trust his judgement.

I stopped Clonazepam (after a lengthy weaning), and am still feeling lousy from that, with a burning sensation under my skin that comes and goes. I've also been on and off about six antidepressants over the last four months, which I think also messes with my brain and its signals. So there is a lot going on. I do believe that if my neurologist had put me on Dr. Silber's plan, I wouldn't have gotten into this state. I thoroughly understand why someone would move to be near a quality care center! Well, appreciate the thought, and thank you for responding! Much appreciated!

[Polar Bear]

Poor sleep can cause all sorts of issues however I don't think after two years that dizziness and nausea will just get better. It could be worth trying a different opioid. Or it could be a side effect of another medication. Many meds are a case of trial and error.
Also, antidepressants can trigger or cause RLS to worsen. If an antidepressant is necessary then any increased RLS symptoms require appropriate medication.

You may have said in other posts but what is your ferritin serum level, it needs to be up around 100.
As a 'by the way' regarding your sleep have you been checked for sleep apnea. I didn't realise I had this and now wearing my prescribed cpap mask has improved what sleep I do manage to get.
A burning sensation could be neuropathy, I have this and take pregabalin which has the bonus of also treating my RLS (together with Codeine).