Is it lack of knowledge, or something else?

[Ceba1]

From what we all observe here, most general practitioners and some neurologist are not approaching the treatment of RLS according to what is now the accepted protocol. But who is asking why?

For many of us we just want to get better and this question does not matter. But for some who are concerned about a system that is doing a horrible job of helping people with this problem - or just looking for a question to ponder as they pass the sleepless hours - we ask why.

It could be that the doctors don’t know about RLS and the change in the treatment protocol. This is what many here assume. But it could be something else as well.

What if they do know what needs to be done but for other reasons - administrative within the hospital and their own financial interests - they are choosing not to follow the proper protocol.

As I understand it, the current protocol is basically this: take people off dopamine agonists, the patient then has severe withdrawal symptoms, try iron infusions, try gabapentin, then try pregabalin, and if necessary move to a low dose of an opioid.

The above approach, though medically indicated presents the following problems for the doctor:

First she likely risks being discovered for having made a mistake for continuing you on the dopamine agonist, or worse increasing the dose, after it was no longer the accepted protocol. To large part she risks you knowing that all the hell you are about to go through was in large part her fault. This triggers complaints and possibly legal actions against her. So there is a strong incentive to avoid this. She can “kick the can down the road” by increasing the DA or referring you to someone else. She will have fewer complaints.

Also, the process of taking you off the DAs, having you suffer withdrawals, and then trying other treatments, it doesn’t fit well into the profitable model of 15 minute consultations in high volume. You will be calling repeatedly seeking help. Falling outside the preferred 15 minute high-volume model causes the doctor to be disfavored by her employer and prevents advancement ($$$$) within the current model of health care delivery.

Finally, if she follows the required protocol, she will probably need to order iron infusions and possibly opioids. This will draw huge attention to her practice as these treatments are also disfavored by managed care. Again thwarting her advancement in the system of corporate medicine.

So, we all observe that in most cases the doctor does not do what is required to effectively treat the condition. And, digging deeper we see that in most cases the doctor has a huge disincentive to do what is required. So, is it lack of knowledge or something else?

[SueJohnson]

RLS hasn't been taught in the UK and probably not in many medical schools in the US so they don't know how to treat it and if they look it up online they see that the way to treat it is with DAs. It has only been in the last few years that the protocol has changed so there are hundreds of articles saying treat with DAs. Most of the recent knowledge is in the US and many UK doctors don't want to go by something in the US and besides they have looked it up online. The US doctors who don't know anything also look it up online. I don't think once they know that they are afraid of the risks etc nor feels a great disincentive to treat correctly. Opioids are often not prescribed because they are not aware of them in treating RLS and in the UK may not be allowed in various places and would need a neurologist to recommend them and in all countries because of the opioid crises and think they are addictive.

[Kakally]

what Sue says is correct but actually massive crimes have been committed over the past 20+ years.

There were missed warnings about the potential for long term side effects of DAs going back as far as the 1970s ! Clearer warnings came in 1996. Ignoring this and others , plus with suppressing or avoiding long term research in the ‘noughties’ occurred, plus dishonesty and then flooding the market with DAs hurled at treating RLS subsequently set off a runaway train.

This resulted in wrong treatment, lack of encouraging and getting good research carried out, and subsequent appalling/non existent teaching . This has put RLS back by 20+ years….

I am just about finishing my little book on the subject. It is called :

Restless Legs Syndrome, RLS : Evidence of Evil’

And it is a personal view of the scientific historical background of Restless Legs Syndrome and serious faults in RLS education, treatment and research … .

To get the best help at the moment we have the updated Mayo Algorithm and Andrew Spector’s great book. Mine just points to how and why we are in this dreadful mess with RLS management etc…

[Chocolate123Lab in reply to Kakally]

Wow. That’s amazing you’re writing a book on the subject. I look forward to reading it.

[Kakally]

thank you. I’m not saying it’s brilliant but it is so important to see how the total mess and wrongdoing has come about or otherwise the truth won’t be told and it will continue to be brushed under the carpet.

The big Pharma will win anyway but mostly we need to get back on track with right management, good research to bring better understanding of the pathology of RLS and get to teaching medical students, GPs and neurologists how to help patients the best way possible.

And mostly to give compassion and genuine understanding to us who suffer with RLS…

[SwimLyn in reply to Kakally]

Well done Kakally for articulating the black hole regarding RLS & the total disinterest being made in research & education of our condition. I personally give my hospital specialist printed copies of all NICE & Mayo Clinics upto date research papers & bought her a copy of Andrew Spectors book which startled her but now has no excuse as far as I'm concerned not to be uptodate on what's going on in the RL world !!

[SwimLyn in reply to Kakally]

Well done Kakally for articulating the black hole regarding RLS & the total disinterest being made in research & education of our condition. I personally give my hospital specialist printed copies of all NICE & Mayo Clinics upto date research papers & bought her a copy of Andrew Spectors book which startled her but now has no excuse as far as I'm concerned not to be uptodate on what's going on in the RL world !!

[Kakally in reply to SwimLyn]

Well done. I think we all have to do that if possible to hopefully get them to read them , inform themselves and change their ways 🤞🤞🤞

[JunieBJones]

Ceba1, Your thoughts closely mirror what I think of the medical system, they just don't know about it. We end up being the educators of them if they're open to it. At the end of using ropinirole, I had been 4mg/ 3 times per day. I had seen several providers along the way as well as the pharmacists and no one said, why are you on such a high dose? It wasn't until 2 yrs ago that the PA I was seeing suggested I try to cut back on some of my meds. We happened to start with the ropinirole, decreasing the mid-day dose to 2mg. It hit me like a ton of bricks by the 2nd day, all I did was shake my legs and didn't sleep. On my own, I googled RLS and DAs and found that it was a problem, augmentation, I'd never heard of it before, nor had my PA. So the taper was put on hold. I mentioned it to an internal medicine Dr I saw occ. and she was vague, just said "something about iron levels". I found a neurologist who was supposed to be a specialist in sleep disorders. He wanted me to taper off over 10wks with the help of methadone and eventually gabapentin which didn't agree with me. The methadone just didn't work like an opioid should. There were multiple messages from me in distress because this taper was so horrible. His "assistant" was a lay person and only gave me vagues replies and occ I'd hear from him. After about 10 mos. I finally got off of the ropinirole. He immediately started to taper me off of the methadone, but the elephant in the room was that I still had RLS. I know physicians can't know everything, but if they'd dedicate a few hours to reading online or listening to webinars by reputable MDs like Dr. Berkosky or Dr. Winkelman on YouTube, they'd be so much smarter. Over the years I've heard comedians making jokes about RLS, maybe some MDs think it's a joke also. It just ends up being "on us" to do the research and education. Sorry I've carried on so long. Thank you.