Restless Legs Syndrome (RLS) Discussion Board

I am trying to find a neurologist in the Norfolk area who is experienced in the use of opioids in refractory RLS. My 85 yo mother in law has been successfully managed with low doses of methadone but her neurologist retired and her current doctor is not comfortable with prescribing methadone. We are struggling to find a new neurologist skilled in dealing with refractory RLS and methadone. Any recommendations are appreciated.

You might have to go farther afield if you can't find someone nearby. There is an RLS Quality Care Center (QCC) at Johns Hopkins in Baltimore, but I'm not sure if they are accepting out-of-state patients. There is also one in Pittsburgh. https://www.rls.org/treatment/quality-care-centers

Even tho her current doctor is not comfortable with prescribing opioids, he/she might be able to recommend someone who is - it's worth asking, if you haven't already. Sometimes it is impossible to tell if a doctor will or will not prescribe opioids, without actually making an appointment and meeting him/her and explaining your MiL's history and situation. But that said, it is also reasonable to call all the clinics in your area and ask to speak to the head nurse (not sure if I am using the right term), explain your MiL's history and situation, then ask if the nurse is aware if any of the doctors in the clinic do prescribe opioids in cases of need.

Another thing to do is see if there are any pain clinics in the area. You would probably want to explain that this is not a case of pain as it is commonly understood, rather it's a sensori-motor disorder with symptoms that are alleviated by opioids - in other words, the etiology of the disease is very different from that of pain conditions. Sometimes the doctors at these clinics are good and can substitute for a GP who won't prescribe opioids. Other times they're jaded and seem to have a mindset that everyone who uses opioids is a lazy addict.

Not sure off the top of my head what else to recommend; except, please don't give up. I can't bear to think of your poor mother in law at this stage of her life being made to suffer grievous torture that is completely unnecessary!