Finding the right GP

[Scott234]

Any advice on finding the right doctor to help. I have just started having symptoms and I feel my GP doesn’t really understand? Thanks

[Madlegs1]

If you indicate the part of the world you reside in, and how far you are prepared to travel, someone may be able to help.

South East UK is fairly good but long waiting time.

Good luck.

[Scott234 in reply to Madlegs1]

In in South London

[Scott234 in reply to Scott234]

Don’t have a car so limited to public transport

[Madlegs1 in reply to Scott234]

I'm sure someone will chip in if they have any contacts.

I know there is a Dr Chaudry in a London clinic.

[Joolsg in reply to Scott234]

I’m in South London but like you, found my GP was not only ignorant about RLS , but down right negligent.

I came on here, found out as much as I could, received excellent advice from the members of this forum and got off the meds which were making my RLS worse.

Your GP should at the very least look up the NHS site which explains what RLS is and how to treat it. Your GP should arrange a full panel blood test as a minimum.

There is so much useful info so please spend a few hours reading the recent posts and particularly Manerva’s replies as all the info on meds to take and avoid are listed there.

Professor Ray Chaudhuri at King’s College hospital in Denmark Hill London is an expert in RLS so ask for a referral ( it will take months) so in the meantime, read up on meds and ask for the blood test and start taking ferrous bisglycinate every other night if your serum ferritin is below 100.

You could also start taking magnesium citrate every night and keep a diary to note any triggers.

Anti depressants and anti histamines ( including cough and cold meds like Benadryl) cause or worsen RLS.

Look at the main RLS UK website which will also include info on how RLS is diagnosed and the types of meds used to treat it. You may not need meds if your RLS is caused by low iron.

[Joolsg in reply to Scott234]

Also, has anything changed recently to trigger the symptoms ? Any new meds or foods?

[Hidden]

Any "good" doctor can help.

By "good" I mean someone who is prepared to listen to you, discuss your symptoms and is able to admit that they don't have much knowledge about RLS, but are willing to find out more. A good doctor will also consider anything you may know about your condition.

To this end, as Jools suggests, you need to find out as much as you can about RLS for yourself then when you see your doctor you can tell them what you've discovered.

One thing that you may find particularly useful and may not be aware of but in the UK, a government agency i.e. the National Institute for Health and Care Excellence (NICE) issue evidence based guidelines for NHS doctors to follow when encountering patients with many conditions.

RLS is one of these conditions. The NICE guidelines for RLS tell doctors what to do and a doctor cannot afford to ignore these guidelines, a failure to do so could open them to a charge of negligence.

Here's a link to the guidelines. You can refer your doctor to them.

cks.nice.org.uk/restless-le...

It may be that your doctor needs to confirm the diagnosis of RLS first and it would also be good for you to be sure. The diagnosis of RLS is made by comparing your symptoms to the internationally accepted RLS diagnostic . You, (and your doctor) can do this by following this link.

irlssg.org/diagnostic-criteria

If you do have RLS, as Jools says, the first thing the Dr should do is carry out iron deficiency tests. Correcting iron deficiency should be the first step i treating RLS.

Yoiu also need to see if any medications you're taking or any otheer health condition you have is causing your symptoms. Tbere are many such!

You can find out more about treating RLS from an article written by a RLS expert, i.e.e someone who specialises in tearting RLS, not just a GP and not just a general neurologist.

Here's a link to the article.

uptodate.com/contents/treat...

[Hidden in reply to Hidden]

Good morning

Your advice and info is always top rate. I have just read the NICE guidelines that you highlighted and under the drugs to consider first were dopamine agonists which I thought now were not the first drugs to use - or have it got it all wrong?

[Hidden in reply to Hidden]

Hi

The NICE guidelines are a little dated and are supposed to be reviewed this year. Whether that happens or not is dubious due to covid 19.

Dopamine agonists are mentioned first in order of the two alternative RLS medications which implies, but doesn't actually state, that they are the first choice. They do at least warn of the risks of the complications.

It is possibly only more recently that the scale of the complications of DAs has become more apparent leading to recommendations that the alpha 2 delta ligands, also mentioned in the NICE guidelines, are preferably the first to be tried.

Both the ligands and DAs remain as "first line" medications for RLS and if the ligands aren't effective for someone, then the second choice is a DA.

Other options are only currently accepted if the two first line medications both fail, i.e. "refractory" RLS. Targinact is licensed for refractory RLS !in the UK. Presumably, as in the case of other medications, only a specialist can prescribe targinact. The NICE quidelines do include criteria for referral to a specialist.

The effectiveness of the ligands isn't as pronounced as DAs. In addition some RLS specialists state that whether a DA or a ligand is used depends on other characteristics of the person with RLS.

e.g. DAs are, it's said, better for someone who is overweight and/or suffers depression, ligands better for someone with severe insomnia and/or anxiety.

Reading the side effects of both is quite horrendous.

Although ligands have the distinct advantage of not causing augmentation or impulse control disorder for some people they can cause apparently irreversible visual problems. Additionally, for people with central respiratory depression for any reason, e.g. COPD, central sleep apnoea or opiate use, using a ligand carries the risk of causing respiratory distress.

Furthermore, augmentation caused by DAs has only really become apparent because DAs have now been used for some time. Since ligands haven't been used as long for RLS, the scale of the effects of long term use haven't yet become apparent.

I do know that some people who have bad experiences of ligands are just as vehemently against them as others are vehement about DAs.

It has to be recognised that the ligands, at the current time, have an edge over the DAs simply because it is known that DAs aren't a long term solution. That may change.

There are also people who have taken a DA long term who get quite indignant at the suggestion that there are problems with DAs.

Neither class of medicines is ideal for RLS.

Some RLS experts are now suggesting an opiate should be the first choice of treatment, but there seems little possibility of this being generally accepted.

I believe that more recently there have been investigations into the role of adenosine in RLS, as this is something which affects both dopamine and glutamate mechanisms, whereas DAs only affect dopamine function and the ligands only glutamate.

In the meantime as someone who suffered for years as a result of taking a DA and has found taking gabapentin quite acceptable for myself I think it's worth recommending as the first drug of choice AND as an alternative to DAs when someone has suffered augmentation.

I also recognise that there are other factors affecting RLS and that non pharmacological measures should be tried BEFORE resorting to drugs and also should be tried concurrently. Perhaps not enough attention is paid to these. Unfortunately, despite efforts to make health care more holistic, it is currently too counter cultural to make any real headway.

So, simple answer to your question, yes, you're correct. The NICE guidelines are scheduled to be reviewed.

[Hidden in reply to Hidden]

PS you'll see the NICE RLS guidelines were last issued in 2016 and revision was supposed to start only 3 months ago.

[Hidden in reply to Hidden]

Thank you .

[Hidden in reply to Hidden]

You're welcome

[eddied]

You are right; GP's will try to help in some manner, but it is best to ask to see a sleep specialist. Once I saw the specialist, treatment has been so good. They are so much more familiar with RLS, and have treatment plans to help you. Best of luck to you.

[restlessstoz in reply to eddied]

I'm very glad you found a sleep specialist who could treat you but I have to disagree as I saw a sleep specialist who had absolutely NO idea about RLS. Like GPs and neurologists, sleep specialists are a mixed bag of those who know and those who don't! It's a good idea to research the specialist first.

[Hidden in reply to eddied]

Overall, I get the impression that SOME sleep specialists may be familiar with RLS, but more likely PLMD and SOME neurologists familiar with RLS.

However, I don't think it can be automatically presumed that either are familiar with RLS.

It's also a matter of practicality. In the UK although the NHS ethos is supposedly that you have choices, in reality, the choices are limited.

Generally speaking, although possibly with some exceptions, a GP will refer someone with RLS to a neurologist. If they suspect you may also have PLMD or another sleep disorder, say sleep apnoea, they may refer you to a sleep clinic.

Last time I sought a referral, I asked to be referred to a sleep clinic and my GP said "No, RLS isn't a sleep disorder, it's a neurological disorder. ". She also told me I'd have to wait at least 6 months to see a NHS neurologist and suggested seeing one privately. Let her know when I found one!

In addition, UK criteria for referral to a specialist fir RLS includes the failure of both first line treatments.

As regards RLS not being a sleep disorder, officially, according to the ICD-11 (International Classification of Diseases version 11), RLS is a "Sleep-movement disorder".

As regards sleep specialists they may be more familiar with PLMD rather than RLS. If polysomnography is performed in a clinic then PLMD can be observed, along with apnoea and other sleep issues. Home sleep assessments won't detect PLMD.

Although 80% of people with RLS also have PLMD, 20% don't. In addition, although sleep apnoea is also associated with RLS, not everyone with RLS/PLMD has that.

You will get some individuals saying their specialist (neurology or sleep) was great, others not.

Perhaps in the UK we are overdependent on health services to cater for everything. Recent generations seem less able and less willing to play a part in looking after themselves, and each other.

Recent involvement in a community self care initiative, led by a local GP, made me aware of the extent to which we can self care and HAVE to be if the NHS is to be sustainable.

This is brought into sharp relief by covid 19 which has almost taken the country back to pre-NHS times.

I say this to support my view that if you have RLS particularly, it's advisable to know as much about it and its treatment as you possibly can. Furthermore, you cannot expect any doctor who is not a dedicated RLS expert to be well informed about RLS.

Incidentally, I never did find a private neurologist, but luckily was able to follow my own path and achieved an excellent outcome without consulting any doctor.

[Kaarina Administrator]

I cannot recommend a GP, but if you can find a doctor to listen to you and eventually refer you, here are a few names of people that other sufferers have recommended in the past:

Prof Adrian Williams, Guys and St Thomas' hospital

Dr Paul Jarman, National Hosp for Neurology and Neuropathy, Queen Anne's Square

Prof Bhatia's Clinics, Institute of Neurology, Queens Square

Prof Huw Morris, Royal Free & Nat Hosp for Neurology

Guy Leschziner London Bridge Hosp/Guys & St Thomas' Hosp

This link may help you/ GP with diagnosis: rls-uk.org/diagnosis

Hope this may help.

[Hidden]

As an afterthought and I'm sorry it may not help you in the short term, but I'd compare finding a "good" doctor akin to finding a good gas and elecricity deal where even the government state that if you're not getting a good deal, you should change your supplier.

A couple of times I've been on the switch site that claims to save you hundreds of pounds a couple of times. Both times the best deal it came up with was MORE than my current deal with the SAME company I was already with. I note the adverts now for a company that automatically changes your supplier every year! The best deal, it seems, seems to be considered the cheapest.

I investigated suppliers for myself over a year ago and changed to a supplier that was actually more expensive. Why? Because (according to Which, and my personal experience), whereas as my current supplier had been bottom of the list for customer service, (it was c***), my new one is top.

Energy suppliers should be taken to task for their poor performance, not allowed to get away with it by advising constantly switching. .This is based on the theory that competition promotes quality.

I think where there's obvious need for improvement in the service given by a doctor, especially in relation to "customer service", then this needs to be addressed rather than switching doctors.

Not punitively or by expecting them to know more, but by promoting partnerships between doctor-patient in making joint decisions and negotiated care plans rather than doctors seen to be an "authority".

Which incidentally is what the government's latest ten year plan is supposed to be promoting!