Restless Legs Syndrome (RLS) Discussion Board

For those of you who are not members of the Foundation, you should know that they are hosting a Patient Symposium in San Diego, CA in September. There will be presentations on a number of RLS topics and many of the big names in research and treatment of RLS will be there. Here is your chance to meet and talk to Dr Earley, Dr Allen, Dr Winkleman, Dr Bachfuhrer and many others.

For more information, https://www.rls.org/get-involved/18symposium

What great news! The first time they had one, I went. I was in such a horrible place. I met Dr B and others and for the first time felt hopeful. Truly changed my life.

And, what great news that I am close by! Will definitely see if we are in town and if so, I will be there!

I just registered for this symposium. What a great opportunity to meet the specialists. I coordinated this with my appointment with Dr. Poceta. My daughter is coming with me in place of my husband. She has shown the beginnings of RLS and I am sure she will benefit also. I hope there will be members of this forum attending.

2bassetmom, your daughter should get her serum ferritin checked. If it is low it may be contributing to her rls onset.

You are right! Thanks for the reminder. I'm having routine blood work done tomorrow and I will ask specifically for a ferritin level check. I have been on an iron supplement since April.

What I want to know is; for those of us with severe RLS and who have endured augmentation; how in the world could we make a session starting at 8:30AM? Actually that is kind of half joking. The way my RLS is, I don't think I could drive there. I recently have been getting severe RLS symptoms sometimes when I drive. But I really would like to go to the dinner where you meet the experts.

The arrangements for the meeting are going to be interesting. We probably present a challenge to the banquet staff at the hotel. How do you set up the rooms for the talks when a large part of the audience prefers to stand and walk around? What do you serve as refreshments when most of us avoid caffeine? I can see the first day, two coffee pots (one regular and one decaf) and hot water for tea. The decaf coffee and the hot water disappear and the only ones drinking regular coffee are the doctors.

*egraves01* when I have to be in the one place for a length of time e.g. international flight... I double dose my meds. Not telling anyone else it's the way to go, just that it's what I do.
I visualise people standing, sitting while jiggling, walking on the spot etc. and noone will mind.

*Rustsmith* re the coffee pots

Polar Bear wrote:*egraves01* when I have to be in the one place for a length of time e.g. international flight... I double dose my meds. Not telling anyone else it's the way to go, just that it's what I do.
I visualise people standing, sitting while jiggling, walking on the spot etc. and noone will mind.

Thanks for the suggestion. I am going to have to think about what I will do.

I am excited to be going. Can you imagine the hotel at night where some will be staying? Lights going off and on, people walking the hallways. We have to keep a sense of humor here. I'm sure it is expected that there will be a lot of walking and standing in the back during the lectures. But, these are experts, they would think it odd if we all sat still in our seats. If you can, do try to come. Also, it is a beautiful setting where the symposium is being held. Hope to see you there!

A bit far for me.... 5,000 miles

Polar Bear wrote:A bit far for me.... 5,000 miles

Ah, but you could see family just a few hundred miles away!

I probably wouldn't be going but for the fact that I needed to see Dr. Poceta for a follow-up appointment at this time. When I saw the symposium was at the same time I decided to take advantage of the opportunity. Plus we will get to spend time with one of our 4 sons and his family who live in San Diego. An encouraging note: the PA who manages my prescription for oxycodone and OxyContin wants me to bring her any information that I can get on RLS.

Indeed Ann..... under different circumstances. For one reason and another it's just not feasible at present.

Polar Bear wrote:Indeed Ann..... under different circumstances. For one reason and another it's just not feasible at present.

One of these days it will work out and it better be when I am in California as then we can physically meet - Beth can come down from Canada, me from California, and Steve for Colorado. .

A girl can dream, right?