KarinaI agree with what you say which is right and proper. However, and this is a real problem for many members, among the medical profession in the UK there often is:
1. A lack of awareness of Restless Legs Syndrome
2. Even when there is an awareness there can be a lack of understanding about the medications, dosage, etc.
3. Sometimes even a refusal to treat for RLS!
Many members have expressed their frustration with doctors and neurologists. I myself have experienced issues with 2 neurologists and their lack of understanding with the medication they prescribed.
So whilst this is negative, we need to address this issue and find ways to inform our medical professionals.👍
Written by
RLSofManyYears
To view profiles and participate in discussions please or .
The ability to reply to this post has been turned off.
The sad thing is that there are contributors here who are better informed than many supposedly qualified medical people, including consultants.
That is perfectly understandable for GPs, who have not covered RLS in their training, and have little spare time to be educated further.
Specialist consultants who charge huge fees, should definitely be better informed.
In certain cases that we have experienced on this forum, I have advocated a legal course of action against seemingly criminal medical malfeasance. I don't know if this has been followed up.
I do know that the fear of legal action is a huge factor in medical circles. (And not always for good, for patients)
It should be simple enough for some RLS advocacy body to put together a one page advisory note for doctors.
1- check serum ferritin
2- check family history (genetic ?)
3-check triggers-- medications, food and drink, environment.
4- link to protocols-Mayo etc.
5- possible list of treatments -(but this could become a muddling swamp of suggestions - thinking Raff's and soap 😝🍀)
Any new members joining this forum may be shocked by the amount of medical advice given by other members. However, if they do a little background research, they will quickly realise why that is the case.
I totally understand why Kaarina has put up this message BUT I would add the following:
RLS is not taught at ANY stage in medical training in the UK. GPs have NO knowledge of RLS. They are not taught about it at medical school or during GP training. This has been confirmed to me by the RCGPs, the ABN and the medical schools training students in the UK.
Most RLS patients in the UK are treated by their GP after a short 10 minute consultation. In that short time, a GP with no training on RLS will simply look up his medication book and immediately prescribe dopamine agonists.
GPs have no time to look up and research RLS and therefore, the vast majority of UK patients will be placed on dopamine agonists with no follow-up.
Augmentation on dopaminergic drugs is not taught so GPs do not understand it or know how to treat it. They simply increase the dose. I have even seen a neurologist state that augmentation means the need to increase the dose of dopamine agonists!
Neurologists are no better. RLS is not taught as part of neurological placements or training.
We have had instances of neurologists prescribing three times the maximum dose of dopamine agonists, causing horrendous suffering. Other neurologists refuse iron infusions. Many do not know that many common medications cause or worsen RLS.
In conclusion, for the majority of other diseases, I would defer to doctors' superior knowledge.
That does NOT apply to RLS.
We patients are the experts. We live with the condition.
Most people on here know far more about RLS than ANY neurologist.
Tragic, but true.
Without the help and advice of forum members 7 years ago, I would never have discovered that the Ropinirole prescribed by my neurologist was causing a worsening of the disease.
To anyone worried about the level of medical advice being given by forum members, I would simply say, educate yourself. Read the Mayo Clinic Algorithm for RLS. Follow Dr Berkowski's website to understand why dopamine agonists are the worst possible treatment for RLS, buy 'Clinical Management of RLS' by Drs Buchfuhrer, Allen, Hening and Lee.
We have to research and educate ourselves on RLS because the medical profession refuse to do so.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Before we make recommendations to newbies
My comments on the TV programme 
Hey British members, why aren't you using your sleep centres?
My reply to you all.
