Restless Legs Syndrome (RLS) Discussion Board

Didn't want to post something without having an answer from Dr. B. (He is SO good and so responsive--and apparently back from vacation!)

Monday I faxed my neuro (the "youngish" but non-progressive one) saying that if I'm ever going to switch from Requip to Mirapax (I use the generic at 5.5/day, possibly augmenting) that now might be the best time, since I have built up the hydrocodone in my system from my knee surgery.

His response was
Week 1: reduce Requip to 1.5mg 3x/da
Week 2: reduce Requip to 1mg 3x/da
Week 3: reduce Requip to .5mg 3x/da but now add .25mg Mirapex
Week 4: no Requip, now increase Mirapex to .5mg 3x/day

That little "exercise" took him 3 days to figure out. I confirmed all the doses with his nurse who called me with the plan. Nothing said about boosting my Requip with any additional hydrocodone, but surprisingly! he did renew my currrent surgeon's prescription for 7.5/325 hydro.

So what did Dr. B say? This is me, reading between the lines doing an impression of Dr. B, "He's a real a**." It must be tough for him to hear all the issues that incompetent and uneducated doctors--and those that don't WANT to be educated--throw at their patients.

Actually, Dr B provided the correlative figures of Requip to Mirapex and it's "Your dose of ropinirole (Requip) was very high and your proposed dose of pramipexole is extremely high [I already knew that] -- total 4.5 mg of pramipexole = 9-18 mg of ropinirole."

He went on to say one should have a drug holiday of several weeks [I already knew that] and that the likelihood of a new DA working any better at this high of a dose is "very slim."

He concluded "Typically, in situations such as yours, stopping the dopamine agonists completely and changing to a higher potency opioid (oxycodone, methadone) with an anticonvulsant like Lyrica (since you could not tolerate gabapentin) would be a reasonable option with a high chance of success." [I already knew that]

But apparently this guy with a piece of paper on his wall missed the day in class that they talked about RLS. So now my dilemma; how does one politely tell God's Gift that he doesn't know sh*t from shinola? The information I have gathered on this site plus Dr. B's book gave me little confidence he would come up with a workable solution and the fact that he didn't even address increasing levels of hydro to compensate tells me this isn't a road I even want to start down.

Do I give it one more try, in a step-by-step education process (he DID renew my hydro RX rather than putting me back on tramadol) to see how far I can get him to bend and/or change his POV, or just R.U.N.? I only have a month of hydrocodone before I need to get a prescription for more or for something (tramadol?) to take its place if I don't change a thing.

I have so many other things to do right now than to search out another neuro, but we ARE talking about my quality of life. Then I have to assess whether to ask them the big "O" question right off the bat and see whether they take me for a druggie. Thanks.

Kicky, I haven't a clue. Wish I did.

Some docs listen, some don't. I've seen both, but many more of the second type. After seeing at least 15 doctors over time, I've gotten a bit jaded and have lost much of my patience.

I've tried multiple approaches. The one that seems to work best is the "This is affecting me and my life. I cannot work well, I need a solution. I need you to partner with me to find that. Will you do that?"

It seems asking them point blank if they will help puts them on the spot. They don't always answer yes, however.

I always come with my email copies with Dr B, my history, and the green book written for physicians on managing RLS.

They also can answer yes and then be unwilling partners - that was my last doc. She said yes and then wouldn't talk with Dr B or read what I brought.

My latest solution? I fly to Dr B. I'm effectively unemployed (starting a business, no income at the moment), have no health insurance, and really can't afford to fly there to see him. But with one visit, I have his help for a year and he's willing to do quite a bit remotely.

Hi Kicky,

I've had a GP tell me that RLS was phony, and show me the door. I've had a sleep specialist keep on ramping up my Mirapex, similar to your situation, and I had augmentation up the wazoo. That sleep specialist (in Michigan) told me nothing could be done, and that there were no other medications for RLS.

I moved to LA two years ago (for work), and was so lucky to have found Dr. B, through one of these RLS discussion boards. As much as I hate traveling, I would say the level of care I'd get in return is worth it. If I were to move back to Detroit (or elsewhere), I would still keep Dr. B as my doc, and fly out to see him. It's worth it, in my opinion, to not waste your time and energy on getting the run-around with dumb doctors. I am done dealing with stupid doctors. From what I understand, he works well with patients long-distance, so it's not like you'd be having to fly back and forth every month. Maybe some others can confirm this??

Let me know if you ever come to town to consult with him, and I'll be the ambassador. I'm hoping to meet up with a long-distance Dr. B patient on this board in the next week or two.

warm regards,
Julie

I totally agree with Julie on this. I'm flying out to LA on Wednesday for an appointment with Dr B on Thursday, and my daughter is seeing him again as well. For all the craziness I've been through with my various sleep issues, it's worth it to see someone who just treats the problems, whatever it takes and is knowledgeable and competent.

He just can't ever retire

Susan; for both you and your daughter - here's to a really positive appointment with Dr B.

Embrace dr B from all of us, even from me across the ocean!
Corrie

I saw Dr. B today and told him that I had orders to give him a hug from several members of the RLS forum. He accepted

O thanks Susan, it must have been a nice welcome back to work present for him!
Corrie

Glad that some of you can get relief with a good doctor. Many of us do not have that choice as traveling to see Dr. B is just not an option. Finding a good doctor is hard. With everyone that Dr. B sees he must be very busy. But if there are doctors like him who can treat RLS, is there any way he could use his expertise to train other doctors? Probably he would just run into a brick wall because the others "know it all" anyway.
One doctor can only do so much.

He does do training. There are just too many doctors and not enough time to do that, write multiple books to help us, and see patients. Oh, and serve on the RLS board.

I seem to have hit a nerve--certainly did not mean anything against Dr. B. Just hoping for relief for the rest of us with a good doctor.

Not sure why you think you hit a nerve...my reply was just a reply . You asked, I answered

I live in Northern Ireland where we do not have an 'rls expert' at any level. On occasion I have emailed Dr B and taken a copy of my email with Dr B's reply to my GP.

Thankfully my GP is fully up front about his lack of rls experience and is ok about this.

We all have to do what we can to get the best for ourselves, be it with our own research and this site, and a cooperative GP who does not feel we are undermining him.

!!!

I gave one of my doctors a book (by Hening, Buchfuhrer and Lee called Clinical Management of Restless Legs Syndrome), which he accepted and eventually read and admired. That is what convinced him to eventually prescribe codeine for me. Too bad that doc left town, and codeine wasn't anywhere near enough; I think after I had suffered enough, he would have worked his way up to the methadone or hydromorphone, using that book as a guide. I hope it's helping him in his new practice!

So that's one way Dr B does training, by writing books. But we sometimes have to go the extra mile to make our own doctors aware of the information that's out there, not necessarily by giving them a book, lending would do nicely, or presenting a printout of the Mayo algorithm for treating RLS (see Polar Bear's or Zach's signature for a link); but the point is to hand them something physical, so they're more likely to respond than if you give them a website or a name to look up. And let's face it, some of them are way more receptive than others.

I think I know how you feel, firefly; I even thought of ways I could hijack my doctors and send them to an RLS conference or somehow force them to spend time updating themselves.