Restless Legs Syndrome (RLS) Discussion Board

I just returned from a visit with a neurologist at the Mayo Clinic who specializes in movement disorders and what he told me seemed to go against the Algorythim that has been put out by the Mayo Clinic and I am wondering if anyone has ever been told the following:

This Neurologist told me that opiates can make RLS-WED worse, and even though I've augmented on dopamine agonists and am currently prescribed hydrocodone for my symptoms he recommends getting off the hydrocodone completely, waiting about three months (with no medication for my 24 hour a day symptoms) and then slowly reintroduce Requip into my system.

I used Mirapex succesfully for about 5 years before augmentation set in and it slowly became symptomatic 24 hours per day. I have been off the dopamine agonists for about 3 months now and the only thing keeping me somewhat sane is the hydrocodone, although it only takes about 70% of my symptoms away.

The neurologist's recommendation seems to go against everything I've read about refractory RLS (which he agreed that I have), and he has ordered additional testing to see if I have any other neuromuscular conditions that may be making my symptoms worse.

If anyone has an opinion or experience with the above, I'd love to hear from you. As always, thanks in advance for taking the time to respond. I am beginning to feel helpless and like a "widget" that is just being lumped into a category, which is discouraging coming from the Mayo Clinic... The idea of not having any meds to treat my RLS is truly frightening.

I feel as if I am missing something here.... or that I am on another planet !!
What is this guy talking about.

It is my full understanding that opiates definitely will give relief from WED symptoms. It may take a little time to titrate up to the required dose. And I have never heard it put blankly that opiates can make WED worse. It has been mentioned that there is a very slight chance of augmentation when on tramadol but I think this is very uncommon.

How can he have any idea of WED at all to suggest that you go without medication for 3 months.
My opinion only - but to do that is downright cruel.

Did you take a copy of the RLS Medical Bulletin with you to discuss medications and treatment with him.

I wonder....... what about an email to Dr B stating exactly what you have said in your post and ask his thoughts on the matter.

I went off my Hydromorph and Oxycontin for 4 months all it did was make me into a raving lunatic (well behaved one but one just the same) It never leveled off or improved the rls/wed actually it just kept ramping up. no matter what i took. I tried mirapex and requip. So I'm with PB about it. It sounds to me like he's more worried about the type of drug than the real affects it's having for you. Not my place to say, but he's not the one trying to live with it.

Wow....that must have been quite a let down.

I can say for sure that my WED is no worse in the 5 years I've been taking opioids. If anything, it's slightly improved over time from the 24/7 augmentation. I'm not more like 16/7. lol. I do have a break in the 5 AM to 1-2 PM time frame. I didn't used to.

Unless he knows of new research that I've not seen, what is says is not in line with all the published material I've read or with how many specialists treat it.

Thanks, Views.... It was a complete let down. I've not seen any thing online (ever) that supports his view.

Someone posted research recently that opiods somehow interrupted the mechanism of the WED, actually taking it away vs. masking it. And it didn't seem like that was a shocking conclusion to the researchers.

First I would make an appointment with someone else. Then I would email Dr. B and ask him his thoughts on that treatment plan. My thoughts are that the doctor is more than an idiot, he is actually harmful, and that making you be without drugs for three months would be nothing short of absolute torture. I can't even handle one night of it, never mind 90 nights in a row with the days to go along with them! I would pass along Dr. B's response to the doctor but otherwise never again consult him for as long as I lived because he is crazy. Maybe later I'll tell you how I really feel about it, LOL!

Ha! Thanks, Tracy. I agree with you... I actually got in touch with Dr. B last night and am flying to California to meet with him on April 10th. I'm looking forward to meeting with someone who specializes in this dreadful disease.

rlsidaho wrote:Ha! Thanks, Tracy. I agree with you... I actually got in touch with Dr. B last night and am flying to California to meet with him on April 10th. I'm looking forward to meeting with someone who specializes in this dreadful disease.

That's great! I'm so glad you will be able to see him - there's nothing like consulting someone you genuinely trust and respect, especially for such a life-altering disease such as this.

I'm so glad you're doing this!
That other neurologist was (probably unintentionally, but definitely through ignorance he could have made the effort to remove, and presumption he didn't see that he suffered from) anyway, he was about to harm you.

rlsidaho: Its wonderful that you have an appointment with Dr B. I will be so interested to hear how you get on.

I find it slightly amusing that it's a Mayo clinic doctor that doesn't follow the MAYO CLINIC algorithm. After that I find his recommendations reflect a complete and total lack of 1. Understanding of the disorder 2. Compassion. It frightens me to think that there are people who don't find this board and would take his word as fact and go through the trauma of rls symptoms untreated for any period of time....let alone months! I see Dr B as well and I really wonder what I would have done if I hadn't met him! I was losing my marbles at the time and cried with relief after meeting him the first time. Hang in there! Help is on the way.