Restless Legs Syndrome (RLS) Discussion Board

At age 51 my RLS is cured. I had a stone stuck in my billiary system-distal common bile duct. MRCP showed dilation in the billiary system. I had an ERCP to remove the stone. I can drink coffee and eat chocolate with zero RLS symptoms. As far as I can tell a stone can disrupt digestion which is why ...

I'm back after what seems like a very long forever. I started weaning off of ropinerole in about mid July 2023. I had a false start after trying to start the course without a long acting opioid like Oxycontin. No Oxycontin due to insurance denying coverage. About mid August, the plan was changed to...

How frustrating! I moved from one US state to another JUST so I could be by a good doctor. When he retires, quits, or reduces his practice, it will be terrifying.

Was able to get an appointment with a recommended doctor on the RLS.org site, Dr. Durphy, who is a neurologist in movement disorders and specializes in RLS, and I was able to get in with her in May. I am hoping she follows the research of the other doctors on this site. What was the result, Macadwel?

Polar Bear wrote: ↑

Sat Sep 16, 2023 2:19 pm

Desperation makes us try anything no matter how weird or silly.
Happily I am now in a better place than in those the early days thanks to our Discussion Board.

So true.

Becan wrote: ↑

Sat May 20, 2023 1:07 am

Hi
I just re-joined the discussion group but with a different user name (privacy issues). This group has been very helpful so I'm glad to be back.

We're glad you were able to get back, Becan.

Our bodies are complex systems and there can be so many variables. Methadone is the preferred approach in the US for a variety of reasons, but it has its own set of problems and that long half life can make withdrawal very tedious. But, Oxy can be abused when someone is in the 7-8 percent of us that...

So sorry about the COVID!

Looking forward to more updates about this.

Hi Steve, thanks for the suggestion! I was able to make an appointment with a doctor Avinash Aggarwal at the Quality Care Canter University of Pittsburgh Medical Center, as that is the closest center to my location but it is still out of my state. I am concerned about how the medication would be pr...

I hope you do!

I am not a huge fan of the straight memory foam, either. I have a part latex now- it's pretty firm, but definitely better than memory foam.

Ugh - sounds miserable.

There is a post about it elsewhere - search on the word using the search feature (top right) and you should find it.

I wish I had an answer, Deb. What have you been doing? I have never used it.

Let us know how it continues to work for you, Rick. And, hope your body is handling the chemo and radiation OK.

It is SO frustrating. I find mine needs to be at least 200 for any significant reduction (about 50%). But, it took me years to get someone to do that and I STILL struggle with the doctors and hematologists.