Think this site is very good indeed, good to share ones problems with RLS. However I do get concerned at some answers/replies that I read, In that people tell others what to take, or cease to take in medication even when a GP has prescribed something. Is this actually a wise move unless one is medically trained themselves? I have seen one or two remarks in the vein 'your GP doesn't have a clue!'
Don't wish to be pessimistic but could one not be in trouble making that kind of remark.
I understand your concern.
However
?
There are at one end of a spectrum, internationally well reputed RLS experts, some of whom have dedicated years of their lives to researching RLS and specialising in helping RLS sufferers.
At the other end of the specrum.you can find primary medical practitioners who have to deal with a wide variety of health conditions and issues.
Some of the latter will be knowledgeable and expert in the processes of investigating, diagnosing and deciding on how to manage this variety of issues.
They may be empathic, compassionate and motivated to give the best care. However with an education that primarily focusses on anatomy, physiology and biochemistry and an emphasis on those conditions that are more immediately life threatening or are judged to have the most impact on a person's quality of life. RLS will have been barely mentioned in the latter doctors education.
Hence, if an RLS expert says one thing about RLS and a primary doctor says the opposite, which one would you believe?
The doctors that might mistakenly give bad advice to somebody suffering RLS will genuinely be making a mistake through ignorance.
Luckily, at least in the UK there is a national body, NICE that publishes recommendations to UK doctors on how to manage RLS. These guidelines are based on scientific evidence.
If a doctor doesn't do something that the guidelines say should be done or does something the guidelines say should not be done they are actually putting themselves at risk of being accused of medical negligence.
E.g. the guidelines says tests for iron deficiency should be carried out. E.g. they say people should be warned about augmentation.
Augmentation isn't an imaginary phenomenon, it's well documented and it's explicitly stated in the UK guidelines. Yet, a common experience is for people, including myself, consulting a doctor about augmentation to be asked, "What's that?" Or to be told they're imagining it or " there's no such thing" or told to increase the drug when research has overwhelmingly shown it should be reduced.
A good doctor isn't one who knows everything, but a bad one is one who gives the impression they do and won't admit to ignorance or error.
You will read many people in this forum suffering augmentation and never bern warned about it, their symptoms being dismissed as trivial.or imaginary.
Therefore if any one who's had RLS for decades and has a good knowledge of their condition, experience of dealing withn it and is aware of what experts and the research says, I'm glad I listened to them in this forum rather than my own (excellent) GP who nonetheless knows nothing about RLS. - and freely admits it.
In addition, note the law of "informed consent' states that health professionals. are required to inform you of both the benefits and costs of any treatment AND alternatives. That is ANY treatment. "Take this" is strictly speakinhg, illegal.
I hope you appreciate my own anger at being told by a neurologist to take a high dose of pramipexole, for life, with absolutely no mention of any complication. No test for iron deficiency, no recognition of the fact that it was another medication I was taking that had caused the problem. Years of dependency on the drug, years of augmentation, severe whole body symptoms. any time of day, chronic insomnia etc. All only to find out from.this forum, in the last two years that none of that had been necessary.
As regards my other health conditions if I'd blindly gone along with everything doctors have said to me or what treatments they wanted tovtry, I would probably have died 8 years ago.
Don't expect doctors to be infallble or omniscient, it's a mistake. Specialists know a lot about their speciality, GPs know a little about a lot of things, but not necessarily much about anything.
When I write anything that apparently contradicts the medical advice somebody's been given, although I may not always identify it, I can usually back it up with reference to a good source of evidence. You could always ask a doctor what their evidence is.
You have to recognise that we are all different and you may find some misinformation and some nonsense posted on this site, but I hope you can see there are some common, consistent themes and often "pinned posts" in relation to these e.g. iron and RLS, augmentation etc.
People also commonly say the same things e.g. you can't always trust a doctor.
I hope this clarifies things.
That about wraps it up ,Manerva.
Very well put.
I would have been a lot more blunt. 😆😎
I can do blunt, but it usually gets me in trouble.
Been there!😜😎
I like blunt - my cat knows more about rls than many Dr's, with the added advantage she won't misprescribe dangerous drugs. We'll not too blunt.
I would check here before checking a Dr for RLS, i would go to the Dr if my head was hanging off.
Like anywhere you get advice you really should be backing that up with your own research, even if you get it from your Dr. I always advise people research for themselves even after giving them the correct (at that time) advice.
You won't find me prescribing dangerous without warning of augmentation or behavioural changes............... And I don't even charge.
I have a couple of friends who are nurses and they often pick up on dangerous mistakes made by Dr's. You would be foolish to think them infallible, especially after reading here!
I didn't realise one couldn't speak up or challenge without incurring
anger, do apologise Mad Legs!!
That answer was certainly not directed at you, leadingwren.
You made a very pertinent point, which has been raised on this forum a number of times.
Any anger I have would be directed towards authority figures who should know better ( as brilliantly described by Manerva)
You have every right to bring up matters which you find troubling , and should expect polite and courteous answers, which ,I hope you have.
All the best, and keep raising your head above the parapet.
🤩👍😎
Any anger I have is partly through the frustration of being mistreated because of doctors ignorance no matter how good a doctor is in other ways. I get angry at the minority of doctors I've encountered who have been arrogant, patronising, mis-diagnosing, failing to treat, failing to admit mistakes. covering up and in one case possibly a psychopath who should have been prosecuted for manslaughter.
People suffer and people die in the hands of this small minority.
Any anger is not directed at you, it's good to challenge, it helps clarify things.
It's not acceptable however for anybody to respond to a challenge with personally abusive or derogatory remarks. If anybody does that, report them.
Where does one contact these experts please? If there are so many about why are there so many of us suffering? Who is Dr. B to whom you referred?
Dr B is Dr Mark Buchfuhrer , a leading world expert on rls.
He may be found on this site
He is readily accessible by email on that site.
As Madlegs says, Dr Buckfuhrer is accessible by email. He works in Southern California.
There aren't many experts and most of them are in the US, Boston, Baltimore snd New York. At least one in Spain I believe.
I don't know of any in the UK.
Since some members travel from Australia to the US to see one, I guess there's none there either.
Manerva, you are always so thoughtful and compassionate in your responses. Always appreciate your insight. Thank you!
Excellent reply Manerva. And a very polite response.
You make a good point Leadingwren. I will always follow the advice of my health care professionals first. I know they are trained and qualified, even if not Gods! But I may be criticised for saying so. There is a much concern on the forum about augmentation on Dopamine Agonists - but that is what I take anyway. No cure is perfect.
Sadly they are not trained in RLS. Medical schools in the UK do not teach RLS ( I know because I volunteer at one of the leading Teaching hospitals, St George’s in London where they confirm it is not taught on the syllabus ). A GP will never have been taught about RLS and a neurologist will only have knowledge of the condition if they have trained under a senior neurologist with a special interest in the subject.
My MS neurologist has admitted that I know far more about RLS than she does and she now refuses to prescribe dopamine agonists as first line treatment after reading the research papers I have supplied to her on Augmentation and DAWS.
Many of the members of this site are retired and have the time to read the medical textbooks and research articles - most GPs do not have the time to do this.
That’s why most members on the site have more knowledge of RLS than the doctors treating them.
There have been some cases of appalling negligence on this site. GPs and neurologists prescribing 10 times the maximum dose of dopamine agonists and them stopping the supply cold turkey because RLS is caused by ‘psychological problems’. With doctors behaving so appallingly, I will continue to rely on research articles and advice from the experts in the USA.
You are quite right, no cure is perfect.
There has to be a "but" though.
The first but is that dopamine agonists are not a cure, when they work, they just suppress symptoms.
The second but is, for those who've experienced augmentation, it's not an "imperfection" it's a complication in which RLS symptoms become significantly worse.
I can't see why anyone would take a medication that makes their symptoms worse instead of better. This is like taking a medicine for a pain that turns the pain from uncomfortable to agonising.
The reason for taking medication for pain, is to relieve the pain, not make it worse. Similarly the reason for taking a medication for RLS is to relieve the RLS symptoms, not make them worse. Yet in augmentation, that is exactly what happens.
I hope that makes it clearer.
As regards health care professionals, it's sad to say, if I'd always personally followed their advice there would have had considerable more health problems than I have had including potential death.
I've also been unfortunate enough to witness numerous instances of mis-diagnosis, mis-treatment, failure to treat and over-treatment, in some cases leading to unnecesary suffering or prematue death. This is not just in relation to RLS.
I must stress, this is a minority of professionals.
What really concerns me is that most people have a blind faith in doctors in all things and it's misplaced and unfortunately most people have no idea that anything's wrong until harm comes of it. In the meantime, I wonder how many people are NOT getting the best or the most appropriate treatment for their health issues.
I'm pleased that DA's are working for you. BUT please be careful with them. There is a reason why there is so much concern about augmentation on this forum in connection with DA's. I should know. I suffered with severe augmentation due to taking a very high dose of ropinirole, (9mgs sometimes 10mgs per day), which incidentally my surgery were quite happy to prescribe me! They had no idea of the consequences. My GP even now admits he knows little or nothing about RLS and had never heard of augmentation. I have been through hell to get off DA's and am now DA free. My body is still adjusting some 2 months later. I will never go near a DA tablet again.
Going to join in here. There have been many many members who until they joined this forum, didnt know some meds they were taking were making their RLS worse. until some of the more experienced members on here asked them what meds are you taking, what dose etc., that they find out , what they are taking can be making things worse. We have had members on here who have been grateful to get that info on their meds, and been back to their doctors to change them. Most doctors only have a basic idea of how to treat RLS, not all doctors have the latest info. That goes for neuro's too. Dr B, is one of the best across the pond he is an experts on RLS, and researcher as is Dr Early another across the pond who also a researcher and RLS expert he has many video's on youtube on RLS and treatments and research.
👏👏
As a lawyer I can confirm that we have a good defence to any libel action if the statement is true. In most cases on this forum it is true.
I was incredibly lucky that my GP had some knowledge about RLS. He put me on pregabalin and tested my iron levels which were on the low side.
He mentioned DA meds but said he didn't want to go down that road. After reading about those meds on this forum I'm glad he didn't
You're very lucky !
How low was your iron though ? How did you resolve your iron issues ?
I say iron but it was ferritin that was on the low side at 36. The doc prescribed me ferrous sulphate but I'm taking gentle iron instead
I think the “GP doesn’t have a clue” remarks most likely stem from most Gp’s and even some neurologists actually do not have a clue as to proper treatment. Many have admitted that RLS was never taught back in meds school so I can understand where that comment comes from
I have had 3 very good GP’s who admitted knowing very little about RLS. The first sent me to a Neurologist who admitted his knowledge of RLS was limited but told me I must become my own expert and gave me several references including this site and Dr B’s book. I was told on here to educate my GP and I have tried to do so. They have each appreciated this and listened to advice from here, gained confidence in me and been willing to arrange tests and prescribe as per my suggestions.
Had they not done so I would have changed GP!
I agree. It's fine for people to discuss the pros and cons of various medications and doses, but when it comes to prescription medications, people should work with a doctor. Many doctors know nothing about RLS and some doctors are straight-up idiots, but they probably know more about medications than patients do. It's good to see a specialist if you can, but not everyone has that option. RLS patients need to keep talking to their doctors until they get a satisfactory result. It always takes too long but you have to keep trying.
Thanks Suesweda, this is just the point I was trying to make. It's good to share experience and symptoms, but as you say Drs. know more about Meds than the average Man/Woman in the street. I read the dos and donts on Meds. which are sometimes overwhelming, but always ask a pharmacist if I get the chance.
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