Restless Legs Syndrome (RLS) Discussion Board

I am not sure if I am starting this topic in the right place. I had hoped that I would see it as soon as I came to the site since I am holding out a lot of hope for this after having been on just about every medication/combination of medications prescribed for this miserable disease. I have asked my neurologist who specializes in sleep disorders including WED to be referred to physicians at a nearby well known university hospital. These physicians specialize in movement disorders and apparently are using Botox to treat WED. My neurologist told me that she knew of no such thing,and seemed quite annoyed. I don't think she takes this disease seriously because she told me that I would be laughed at for seeking out this treatment. When I called the office of these physicians, I was told that this treatment exists and that it is done there. Perhaps the front office staff person was mistaken? I was wondering if anyone on this board has had experience with this. If so, what was your experience?

Well, I believe she is wrong - some people do do it. I only know of one person on this board who tried it, however, and it was long ago - at least 7-8 years ago. Likely others have, but it's the only one I remember specifically talking about it. It didn't work for her. BUT, a few months later, she learned that she had both RLS/WED and small fiber neuropathy - at the time, they'd thought she only had RLS. So we don't know if it helped her WED/RLS or not since the SFN was untreated and driving her crazy.

I hope someone else sees that that has experience and has tried it. My guess is that it's not researched, therefor most insurance companies don't cover it. Most of us get the treatments that our insurance will pay for...and do not try the ones it doesn't.

I did have botox injection for shoulder issues... dont know if this is helping or not.....dont know where you would get the injection to help rls...-----

Your neurologist who said you would be laughed at is probably scrambling to learn what she can about it now, after her initial knee-jerk response. Don't worry, it's a real treatment, I don't know how effective, not enough studies on it, but no reason anyone would laugh at you for seeking it out! Except maybe an ignorant neurologist or two.