More on doctors, fear, and opioids

[ViewsAskew]

Well, my insurance changed. You know what's coming. . .my doctor, who so willingly takes care of me and prescribes the only medication that has worked, Methadone, is not on the new list of doctors that I can see.

Several deep breaths.

So, I made an appointment with my PCP. I stopped going to her when the RLS got so bad and she was clearly unable to help me (at the time, no one knew what to do). After over a year of hell, 8-10 medications, and 8-10 doctors, I found the solution and a doctor that would help. For almost two years, the RLS has been under control at least 90% of the time, and the exhaustion is cut to a minimum. My life is about 80% of what it was, and that is pretty good.

So, off to see the PCP. I was armed with Dr B's book, the algorithm, and a printout of a paper that showed Methadone was safe and effective in our popultation.

Bottom line? She wouldn't budge. After a 45 minute discussion, she wouldn't give me the script. At one point, when looking at Dr B's book, she found my name in the index, "Wow!" she proclaimed, "Your name is in the index!" Yes, and I know what I'm talking about, and so does Dr B, but she isn't comfortable with these drugs, this isn't enough information, she won't talk to my doctor because he is not a qualified RLS specialist (read: neurologist), and she won't talk to Dr B because he didn't actually treat me, etc. The only way she would agree to help is if I saw a neurologist, got a treatment plan, agreed to see the neurologist FOUR times a year, AND saw her every month.

^$%#$@

Hmmm, she already sent me to three neurologists and I saw a sleep doc and another neurologist. I also saw two other docs in her practice. NONE of them were able to identify the obvious - that I had severe augmentation and needed to immediately stop the Mirapex. NONE of them. I had to find that out by doing my own research. Now she thinks that I should go back to these same people? Or what? Try other ones in the plan one at a time, spending $50 copay at a whack to see a specialist and try to find the one who will agree to use this drug? Or better yet, magically click my heels to find the one who does get it?

So, with two days remaining on my script, I drove the 60 miles to my old doc. I explained the story to him. He sat with me, shook his head in wonder, saying he just didn't understand why some doctors were so afriad of helping their patients and practicing medicine. He offered the names of a couple of doctors he knows that are close to me and said he knew that if they were on my plan that they would follow his current treatment and were not the type to "flip out" over an extremely low dose of Methadone. Then, he said that even if this didn't work out, not to worry. He'd continue to see me, even if we needed to barter for my stained glass.

What a prince. I almost cried.

I left, armed with two months of scripts, and the knowledge, that no matter what, as long as I can get to him, he will make sure I am taken care of. I just wish there were more like him.

[Hos]

Wow, that doctor is a true hero. He really "gets it." Hopefully one of those docs will be on your insurance. Although, then will your PCP want to see you "monthly?" How silly. Glad there's a happy ending at least.

[jan3213]

Ann

What a nightmare! I know what's it like, as you know, to go from doc to doc and not get the help you need--know they don't even listen because of this or that. It is scarey to go to a new doctor, starting over, knowing how most of them are.

I am so glad that you were able to talk to your doc who's helped you for the past two years. As Hos says, he really gets it, doesn't he?

Good luck with your continued treatment.

Jan

[ViewsAskew]

Nah, forgot to say that I looked as soon as I came home. None of them were on the plan. That would be too easy. These would have been primary care docs - I would have just switched to one of them - but, no can do.

What fascinated me so much was that my insurance would pay her at least $50 a month (I would pay $25 copay), then my insurance would pay the neurologist at least a $100 to $200 four times a year (I would pay $50 copay each time), for a total of at least - MINIMUM - $1000 a year from the insurance company and $600 from me for a minimum payout of $1600.

If they let me see my current doc? It would be a total of $300 from the insurance company and a total of $150 from me for a total payout of $450.

By me paying out of pocket, and the insurance paying nothing? The total payment is $360 - all from me.

Hmmmm. Isn't managed care supposed to keep costs under control?????

Oh, right, we don't have a health care crisis in this country.

[tazzer]

what does that woman need? a purple cow to drop down from above and spell out the obvious before she believes what is right before her eyes? does she think because she has a diploma on her wall she is above learning anything new? &^*%$ those doctors just make you want to take that diploma and make a necklace out of it for them!

what happened to you is what had me worried a couple weeks ago, lucky my insurance ppo just changed their name and the lab co. to use. i am so sorry ann. at least your old doc is willing to work with you to help out.

hugs dee

[becat]

Ann that is horriable, but I have to say, yes what a prince your Real doctor is.
I've kept my GP for over 20 yrs, with or without insurance and could never imagen giving him up. The one thing I learned is that those stupid papers we fill out everytime we go in, well if you draw a huge note on it saying self pay, the prices are lower. LOL Not to mention that he knows me well and my family...........
I'd add your new, not going to see her GP, as one that enjoys her easy license to steal and hand out sold meds..........ugh! We have too many of thsoe don't we.
You stand strong Ann, you have two months to educate someone or well I'm kinda likeing the stained glass trade off
Hugs and don't you dare give up, you know your stuff and any doc would be lucky to get an education from you.
Lynne

[ctravel12]

Hi Ann I just read your posts and am so sorry what you are going through.

I hope that things do better for you. Like Lynne said a dr would be lucky to get educated from you.

Hang in there and keep us posted on how it goes.

[Sojourner]

A little off topic but perhaps close enough. I live close to a major, top ten university hospital that apparently has some sort of RLS clinic (from reading info on their site). The question is, are these types of "providers" more apt to provide a broader range of treatment...specifically a broader range of medications? Or, are they likely to be more conservative. I know that there are many good local neuros, sleept disorder specialists, and PCP's and that the "relationship" is perhaps the more crucial factor but...if all else fails I wonder if a trip to one of these larger institutions would be helpful. Certainly, Ann's post speaks volumes and attests to how important finding the right provider and developing that relationsip can be. We should all be so lucky.

Shalom

M.

[ViewsAskew]

Just my thoughts, but I would think that a place that specializes in RLS would be more open. All of the researchers are - Allen, Buchfurer, Becker, Rye, and more all talk about using opioids. ALL of the docs that helped develop the algorithm must have had joint consensus about it - they specifically state that opioids must not be withheld from a patient if other drugs are not working.

However (isn't there almost always a caveat???), I saw four docs that were RLS "specialists." None were at a place the specialized in RLS, but all of them said they focused on RLS and knew the research, etc. All are listed on the RLS list of docs.

Doc 1: didn't know what augmentation was. Gave me drugs until augmentation was permanent. Did not know that opioids are good for helping get through the period when you stop DAs and the RLS is through the roof in intensity.

Doc 2: only knew the very basics. Immediately referred me to her partner, doc 3.

Doc 3: Knew a lot. Knew that opioids were OK. Said she would use them. Then, she didn't. She kept me on the DAs, even after proclaiming to understand augmentation, that opioids would help, etc. Refused to give more than a tiny dose of the lowest potency opioid and wanted me to just keep trying to deal with the augmentation and the DAs.

Doc 4: Saw him after the "good" doc listened and prescribed Methadone. He speaks about RLS to groups at seminars, etc. He was amazed at my knowlege level (told the good doc that), but said that I should try to get off the Methadone and try other drugs (I'd already tried many). He said that in 18 years of treating RLS, he'd NEVER written a script for Methadone and didn't even know how to do it.

All of these docs were community docs = not part of any group. But, all four of them professed not only an interest in RLS, but a specialty. Their comptency with the disease was extemely varied, but not one of them would use opioids as a primary treatment even when it was clearly indicated.

Per the relationship, it is crucial, isn't it? But, I'm thinking one more thing may be even more important. And that is a willingness to go outside of the accepted norm for the patient's benefit, even if it might call attention to oneself or fly in the face of what the next person is doing. I have a "good" relationship with the PCP who will not give me opioids. I've been her patient for about 5 years and she is a very nice person, compassionate, calls me back, talks to me whenever I need it, etc. But only about the things that are safe. She just will not step outside of a narrow set of parameters.

I honestly wouldn't care if my doc wasn't friendly, though I am glad he is. He could be gruff and have little to recommend him in bedside manner if he'd be willing to say, "Hey, this patient needs something different. I can do that."

How to find them? Boy, I think we all wish we knew. A few years ago, I broached the idea of having a thread in which we would give specific info on "good" docs and "bad" docs. No one wanted to tread there. I would love to see us do that. It's the only way for us to help each other in this regard. I'm not talking about bashing docs, but giving honest info that can help us avoid someone like the four above. And help us find someone like my good doc.

[Walking After Midnight]

Geez Ann...it just makes you mad as heck at Drs AND Insurance companies.

One of my biggest questions is this...what kind of Penalties or Punishment are Doctors being threatened with or actually doled out that makes them so nervous about prescribing medicines that actually work? Some of them act like they are scared to death. Or are they fearful of malpractice suits? And part two of my question is...what about the good Doctors who are able to look past that fear, and look past the stigma that these drugs carry, and are willing to prescribe them, how are they "getting away with it" if others can't?
I think I read on this site, in someone's thread that the FDA more or less threatens Doctors to avoid prescribing certain drugs?

The steel companies in this area got together and opened up the Steel Family Health Center. Each branch has three or four Doctors, a lab and Radiological dept. It's pretty decent care for most things. You pay 20 dollars for an office visit and if you need blood work or x-rays...no extra charge. The thing is, these Doctors, every one of them are either scared to death or just too arrogant or stubborn to prescribe any kind of pain med. other than things like Naprocin or Ibuprofen. It's hard to get muscle relaxers out of them when I have problems with lower back spasms and when they do prescribe them...they give me 20 and NO REFILL. Isn't that something? There's been a few exceptions of course but you have to literally be out of your mind with pain. I feel like they label me as a drug seeker every time I go in.

Anyway Ann...sorry to go off on my own little rant here. I hope this situation works out for you. I'm really happy you have that one good Dr. who's going to work with you. It's just frustrating. ugh.

[jan3213]

One of my biggest questions is this...what kind of Penalties or Punishment are Doctors being threatened with or actually doled out that makes them so nervous about prescribing medicines that actually work? Some of them act like they are scared to death. Or are they fearful of malpractice suits? And part two of my question is...what about the good Doctors who are able to look past that fear, and look past the stigma that these drugs carry, and are willing to prescribe them, how are they "getting away with it" if others can't?

I have first-hand experience with these very things, although I wasn't wanting pain meds for RLS. I didn't know what the problem was, but I was in pain and my former neuro was in the process of "trying" to find out what was wrong with me. He seemed to care that I was in pain initially However, when I asked if I could have something for my pain, he told me that I "needed to see a psychiatrist to learn how to deal with my pain." Turns out I had 6 herniated discs on my thoracic spine (which he never found). He also said that he didn't want patients "sueing him for becoming addicted to pain medication."

Just one week after my back surgery (5 levels fused in my thoracic spine), I developed a severe kidney infection and had to be hospitalized for six days. I was under the care of my PCP by then. My neuro surgeon, who had prescribed Percocet (2 tabs taken every 4 hours to keep "on top of the pain") is two hours away. While in the hospital, my PCP took it upon herself to order that I not be allowed as much pain medication. She cut the dosage in half. I was in severe pain due to the surgery and the kidney infection. But she decided I did not need that much pain medication and would not listen to me. Keep in mind that my surgeon wanted me to keep on top of the pain so the pain meds would work more efficiently.

I had a follow-up appointment with my PCP a week after I was discharged from the hospital for the kidney infection. I had to tell her what medication I was on. When I told her I was still taking pain medication (not even a month after very extensive back surgery), she had the audacity to ask me what hurt! I looked at her and said "my back." What I wanted to add was "you idiot."

My PCP is also friendly, seems to care. However, she does not believe in dispensing pain medication because, in her words (sort of), if I take them now, they won't work when I really need them. Well, DUH, I really needed pain meds a month after my back surgery.

Sorry, this is long and sorry it doesn't pertain to RLS, per se. But, it does demonstrate that: a) many doctors are afraid they'll be sued and b) that some doctors are "just too arrogant or stubborn to prescribe any kind of pain med. other than things like Naprocin or Ibuprofen."

There's been a few exceptions of course but you have to literally be out of your mind with pain.

I have had absolutely no problem getting refills from my neuro surgeon: one for Percocet and now, Darvocet. BTW, I'm 3 months post-op and down to two pain pills day, taken at night, and I'm now at the point where one pill will do. And, I fit into the category of being literally out of my mind with pain a week after my very extensive back surgery (12 screws, 2 rods, 2 wire mesh cages and bone grafts from bone harvested from my right hip) and a very serious and very painful kidney infection in both kidneys just one week after the back surgery. It was the worst pain I've every had.

I could go on and on about insurance, too. But, I've said enough. LOL

The whole thing just makes me absolutely furious!

[necron99]

Wow,
The things we have to go thru...I am so sorry about your change in doctors. For me, there is nothing in the world that is as scarry as knowing that your insurance has changed, or you doctor that you have built a trust with is no longer a option. I am in the same boat, at the moment, and all I can say is, hang in there. I am so mad at the ignorrance that is in the medical field, and I hope that everything will work out for you.
morgan

[FidgetBoy]

Great thread!! The pharmacy world also has a morbid fear of opiates. When I tell my colleagues I'm on oxycontin- their first reaction is, "that's the stuff that Rush Limbaugh got hooked on!" followed by 20 minutes of coersion in an attempt to get me to stop taking it. My parents ask me everytime I see them if I'm off that "horrible" drug yet. (mind you- my dad's idea on how to fix my legs was to have a "stiff" drink every night before bed). If you get right down to it- I think our entire society is hysterical over this class of drugs. It's bizarre, and cruel... yet, understandable given what bad press they've received. Based on poor journalism and urban myths, many people truly believe the only people who deserve pain relief are those with terminal cancer or some other life-ending disease. But what about treating those of us who live on? If we use these drugs correctly and with appropriate surveillance, they are one of the most powerful and effective ways to treat discomfort. Like you, Ann, I tried every med for RLS imaginable... and yet, still, after rebounding and causing an immense amount of stress on my life-partner, the "specialists" kept telling me to go back to mirapex- then requip- then mirapex- then requip.. up all night, pounding on my legs in the dark like a mad man, moaning and pacing... at one point, even feeling suicidal- they STILL wanted me to try Requip "one more time". Because, somehow, giving me a narcotic makes me "Rush Limbaugh" and if I take one tablet... you'll see me on the street corner the next day begging for cash to feed my addiction. It's preposterous! Ann- You and I, and every one able to read my rant, deserve a shot at a normal life. Can I get a witness?

[ViewsAskew]

Witness.

[tashton]

I know what you are going through. I am now seeing a doctor not covered by my insurance that will prescribe opioids because none of the doctors covered by my insurance would. My last doctor was willing to prescribe anything and willing to have me take numerous drugs as long as it wasn't an opioid. I decided that I would rather private pay and get the help I needed but I live day by day afraid that some day I won't be able to continue to pay or that for some other reason this doctor won't be around to help me. It sounds as if you would be best served by continuing to see your doctor that will help you and forget your insurance. I hope for the best for you.