A newbie here, so I'm just kickin' this out there.
Wow that's harsh Emily. You might want to ask her flat out why she advises you to educate yourself on RLS if she's not willing to treat you with proven methods that you know benefit you. Don't be afraid to back her into a corner. The worst that could happen is she wont treat you at all anymore. So you find a new dr. which you may want to do anyways. The best thing is that she doesn't have a good answer so she writes you the Rx. Even if begrudgingly, at least you get the meds that help you. If you haven't already I would suggest printing the medical bulletin from the rls foundation website and asking her to look it over, to at least read the treatment options. Then she'll see in a very coherent, legit publication that the meds you need are totally appropriate. If she won't read it then I'd get rid of her asap. good luck. Let me know if you'd like a link to the bulletin. 
The light of a good character surpasseth the light of the sun
Em
everytime i have had blue cross, it doesn't pay worth a crap! We pay for our family which is 6 people 400bux a month. 10$ copay at dr and $5 pay for generic prescrip, for namebrand it's $15 or $30 depending on the brand and what pharm produces it. When they were trying to find out if i had rls or nerve damage i had about 3 mri's and 2 xrays didn't cost me a dime on any cept the 10$ copay with blue cross it only paid about 80%.
one of the guys that works for this company had triple bypass surgery and our insurance paid 100% so compared to the blue cross i have had, this insurance is great.
dee
everytime i have had blue cross, it doesn't pay worth a crap! We pay for our family which is 6 people 400bux a month. 10$ copay at dr and $5 pay for generic prescrip, for namebrand it's $15 or $30 depending on the brand and what pharm produces it. When they were trying to find out if i had rls or nerve damage i had about 3 mri's and 2 xrays didn't cost me a dime on any cept the 10$ copay with blue cross it only paid about 80%.
one of the guys that works for this company had triple bypass surgery and our insurance paid 100% so compared to the blue cross i have had, this insurance is great.
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
it's been so long, but i don't think it was a PPO, the one i have now is a PPO, so the blue cross PPO might be worth having. my mom has blue cross and hers only pays 80% i'll ask her what plan she has. the name of the ins i have now is called Alliance PPO, well it was they just changed their name to OneNet PPO, the ins is colonial health care.
dee
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
Beanie- I always get annoyed when I hear doctors say things like "you don't want to go down that road" when referring to long acting narcotics. The truth of the matter is, the only reason why these drugs get a bad rap is that drug abusers take the pills, crush them and then either inject them or snort them. Because the long acting narcs have more drug in one pill, the crushing causes a "rush". In reality, when taken appropriately, the longer acting drugs give you less of a rush and more consistent levels. In my mind this translates to LESS addiction. My physician actually took me off my short acting drug because I was popping pills left and right to control my symptoms and was actually taking more drug then I needed to because of this! The argument should be simple- long acting drug, when taken the right way, reduces your "up and down" RLS symptoms and also limits the "stoned" feeling (which is what precipitates a minority of people to become abusers in the first place.)
Josh
Josh, the ironic thing is that I've been on hydrocodone for years. I'm already on that road! My biggest concern is eliminating as much of my rls symptoms as possible with minimal side effects from drugs. The point blank fact is that the narcotics help the most with absolutely no side effects for me. The biggest medical mystery to me is why it's ok to take a pill for the rest of your life that makes you nauseus, spacy, tired or all kinds of other terrible reactions but for some reason it's not ok to take a legal narcotic that's been around forever and doesn't cause these side effects. WHAT is the reason that it's not ok is what I want to know. If you're going to have to take something for a very long extended time then the concern for addiction isn't really a concern. I can understand if the symptoms aren't very severe or come on sporadically or if another med works for you but if you need daily long term medicine indefinitely then why is it "better" to take something that your body wants to reject more? The negitive side effects of medicine are things we experience because our body and it's natural processes disagree with the med. So when I feel a significant side effect or adverse reaction I think it's pretty scary that my body disagrees with that med so strongly. Narcotics have never disagreed with me at all. If i'm in pain with arthritis or something for the rest of my life, why is it ok to take over the counter tylenol or something, that causes liver damage or burns holes in my digestive tract, every single day, but to take a narcotic pain pill that won't do those nasty things to your body is bad. It makes no sense. I'll stop ranting like a maniac now but I'm sure some of you understand my frustration. I've lived in my body for 28 years and while I'm relatively young I know myself and my body and there's nothing I hate more than when a doctor doesn't take that into account when dealing with people. We'll try anything but we know what works after being a lab rat for a while and what we say should carry some weight. Okay. Rant done. Promise I'll keep the length of my posts to a minimum. Thank you.
The light of a good character surpasseth the light of the sun
Beanie. Hear, hear. I agree with everything you've said and then some. I feel that the issue you are bringing up is one of the most important issues for the RLS community. For those of us with severe, unrelenting discomfort, the narcotic class of meds is a HUGE part of our treatment arsenal. The histrionic response we see from the medical community when dealing with narcotics is completely unfounded and clearly demonstrates our medical establishment's inability to accept that with careful monitoring, this class of medications is extremely safe and reliable. My own family doc told me at my last visit that he wanted to get me off oxycontin and when I asked him why, he said that he didn't want me on it long term. What exactly does that mean??? Does long term use = drug addict? Does the removal of this medication, when NOTHING else has worked make sense to anyone on this board? It makes me crazy too, Beanie... I just don't know how to educate an entire country of medical providers.
Josh
Exacly Josh, and I'm sorry to hear that your doctor feels that way. My dr. has been talking about gettng me off of hydrocodone for a very long time. Yet when I need it and he knows i'm in pain he gives it to me because he knows in his heart that it works. What if I have to take a narcotic for the rest of my life? Will that equate to being a drug addict? It's perfectly acceptable to take other kinds of meds for your whole life. And what if it is the only medicine that works and that my body can tolerate well and I rely on it for relief? Am I less dependent on the drug then a drug addict at that point? And should I be punished then by being told I can't have it anymore, that I should suffer with the symptoms. Noone, with any condition, taking any other kind of medicine would be told that they just have to suffer. By the same token I understand the potential for abuse and I wouldn't be surprised nowadays if someone got hooked on something and sued a doctor who was trying to help them out in the first place. I can't blame doctors for watching out for themselves but they are responsible for treating the condition properly and for getting to know their patients well enough to weigh the risks. Andy I hope your doctor will look over the info again come to a diferent conclusion in his mind. good luck.
The light of a good character surpasseth the light of the sun
what josh said is true, when i was on the short acting pill i was eating them like candy, but now that i am on the oxycodone extended release pill i only take 2 aday. and it does not give me a buzz at all. so your dr needs to be a little more informed, because not all of us are dope heads. i told my dr i would rather not have rls and then i wouldn't have to take any kind of pill. but until they figure this thing out then i guess i am stuck with the pills.
dee
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
Ok, I found a good list of dr's who are supposed to know something about RLS. As I'm uninsured at the moment and as some of you have suggested, I would like to call one near me and ask to speak to a nurse and find out about how much the office visit would cost and how they feel about prescribing narcotics. As I don't have money to "try on" a bunch of different dr's to find one that fits right now I kind of need to find out as much as possible before I make an appt. I'm usually very good at this kind of thing but does anyone have any suggestions as to how I might inquire about the narcotic thing without sounding like someone just seeking pain killers? I'm sure I can handle it well but does anyone have experience with this? Know of a good way to inquire and sound legit? I'm considering calling dr. Levy in Des Plaines first as he's the only close one who currently has a correct phone number listed so if anyone has any actual personal experience with him I'd love to get the scoop on him. Thanks so much guys. I appreciate any help.
The light of a good character surpasseth the light of the sun
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ViewsAskew
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I called his office about two years ago - I was in a tailspin. I was in a very tough place, so my story alone was enough.
I suppose you could tell the nurse that you realize there are many drugs available for RLS and you haven't yet tried them all. You have, because of another injury found that opioids work. While you are open to taking other classes of drugs to try them, you are uninsured and cannot afford the very expensive ones, like Requip or Mirapex or Lyrica. In case these other drugs do not work, you also would like to know if this doctor does presribe opioids, as you've heard some doctors do not, though it is indicated on the Mayo Clinic's RLS Treatment Algorithm. Before you make an appointment, you'd like to know that he does treat a lot of RLS patients - not just one or two - and that he does use all of the drugs indicated by the algorithm.
Something along one or more of those lines might work.
I suppose you could tell the nurse that you realize there are many drugs available for RLS and you haven't yet tried them all. You have, because of another injury found that opioids work. While you are open to taking other classes of drugs to try them, you are uninsured and cannot afford the very expensive ones, like Requip or Mirapex or Lyrica. In case these other drugs do not work, you also would like to know if this doctor does presribe opioids, as you've heard some doctors do not, though it is indicated on the Mayo Clinic's RLS Treatment Algorithm. Before you make an appointment, you'd like to know that he does treat a lot of RLS patients - not just one or two - and that he does use all of the drugs indicated by the algorithm.
Something along one or more of those lines might work.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Excellent, very well said! All of those points are very true for me. I could also tell him that my current dr. has given me free Lyrica and prescribed narcotics and tell him my experience with the drugs. We'll see if that becomes appropriate. Well, we'll see if I can even afford the appointment first! : ) I would like to continue taking Lyrica at night even if it proves to be less useful otherwise, I just can't afford it right now. Thank god for free samples! Since I started taking it a few weeks ago I wake up feeling like I've slept for 12 hours. I haven't slept like that since I was in high school! I also haven't even realized how poor the quailty of my sleep had become until I woke up feeling refreshed that first time and felt what I was missing. So for anyone who thinks they suffer from rls while awake but seems to be sleeping ok, you may realize you haven't been after finding a drug that works and makes you sleep like an angel. Of course I hope that's only true for me and that everyone IS sleeping like an angel already. So Ann how was your personal experience with Dr. Levy? Were you happy with his demeanor/treatment? Do you still deal with him? Curious. Thanks!
The light of a good character surpasseth the light of the sun