Restless Legs Syndrome (RLS) Discussion Board

Talk about a HUGE letdown… after fighting augmentation and going through weening off of Pramapexole 3.75 we are having a hard time finding a medication that works for me. Since my current sleep Dr. will not consider opioids I asked for a referral to my nearest RLS quality care center, which happens to be Mayo Clinic 3.5 hours away. Well I just got a letter from the Mayo Clinic and the Dr that reviewed my case at Mayo determined that my illness has not been deemed serious enough for them to see me. I have called and sent messages for them to reconsider and they won’t even let me get a message to the Dr.
A lot of good it does for them to be an RLS Quality care center when they won’t even see people that have been diagnosed with moderate to severe RLS.

Fly, please call the RLS Foundation office on Monday and tell them your situation. The quality care centers are supposed to be there for people like you. The Foundation may be able to pull some strings to get you help.

I am very disappointed at the content of your post. Please do what Steve suggests.

Years ago, when I first had augmentation from the DA's and was going to a pain clinic for methadone, I called Mayo. It's 90 miles away and we used to live near there. They said something like, "Why do you think you deserve to see one of our doctors here?" Having lived in Rochester for 5 years, and having opted to use the other health care system in the area, I wasn't surprised by their attitude. People who live near there generally hate Mayo, but some of the people who come from afar are treated well.

After being refused treatment there, I flew out to see Dr. B in California. I have narcolepsy with cataplexy, augmented RLS, delayed sleep phase disorder, and some apnea, and I still doubt they would let me see one of their doctors.

It's a great idea to call the RLS foundation office.

Rustsmith wrote: ↑

Sat Nov 26, 2022 9:58 pm

Fly, please call the RLS Foundation office on Monday and tell them your situation. The quality care centers are supposed to be there for people like you. The Foundation may be able to pull some strings to get you help.

Already sent them a message about, doesn’t sound like there is much they can do about it, gave me the names of some other Dr.s that unfortunately are in the opposite corner of the state 6 hours away.

Just had a thought. Have you considered emailing Dr Buchfuhrer known to us here as Dr B. He is a top class RLS expert living in California and is happy to answer email questions. I've written to him several times and always had a reply. Give him a history of your RLS and your meds and ask for his advice. If your Dr is (or is made) aware of Dr Bs vast experience in the treatment of RLS hopefully would he take heed of Dr Bs response (if you felt it was useful) RLS sufferrs are willing to travel from afar to see him.
I believe Dr Bs email is now somno5586@outlook.com