No idea Neurologists.

[restless1973]

I'm pretty certain that the neurologists in the u.k. have absolutely no idea in treating rls properly.

[Madlegs1]

I can't possibly comment as I live in Ireland - but I imagine it is similar situation in that some are more knowledgeable than others. Very much a lucky dip or go by recommendations.

Where do you live? Maybe someone here can help you find a goodun.

Good luck.

[restless1973 in reply to Madlegs1]

Hi I live in Kingston upon Hull

[Joolsg]

I have to agree with you restless. I see neurologists in London at least once a year for my MS & mention the problems I have been having with my RLS. Not one of them recognised that I was augmenting on ropinirole & one even prescribed amitryptiline in the mistaken view it would help. As we all know from this site, ami is poison for RLS and increases it 1000%. I accept that they are MS specialists, but they should know at least the basics of RLS and how to recognise augmentation & deal with it. I have been waiting since August to see a specialist in RLS at King's, so watch this space.

I don't know how I would have got through augmentation and withdrawal from ropinirole without the help and advice of the good people on here. More knowledgeable than the neurologists I have seen.

Jools

[martino]

I go to the Institute of Neurology, part of University College London, and my experience has been mixed. However the person I have most recently seen has a very good knowledge of RLS so it is probably very much hit and miss.

[RupertMac]

I'm sorry to hear your experiences haven't been so good. I count myself very lucky to have been referred to the National Hospital for Neurology and Neuropthy in London (Queens Square) where my treatment has been excellent and so far very effective.

It took about 6 months to get the appointment and frankly my GP hadn't even considered referring me there - I had to ask specifically for the referral after years of trying to network through friends of friends of friends who were in the medical profession to somebody who might be able to provide decent treatment. One of them came up trumps!

The NHNN team headed by Dr Paul Jarman has very good experience with RLS and they simultaneously booked me in with the "sleep team" which is headed by Professor Matthew Walker. Within those two teams I have been seen by experienced consultants who understand RLS and have developed proper treatment plans. After a few visits and changes to the drug regime, I am now on 0.5mg Clonazepam and 300mg Gabapentin per day which has given me two whole months' relief so far. Before then I was up at night usually 3-4 times per week and rarely getting more than a few nights' respite at a time.

They are also getting me in for a full sleep study/polysomnogramme although the waiting time for that is 9 months. But the treatment and care has so far been extremely professional, thorough and understanding. I have also heard good things about the team at Kings College Hospital in Camberwell which is headed by Ray Chaudhuri, who is a known expert in RLS.

I've suffered from RLS for about 20 years and tried pretty much everything there is to try. This has been the longest period of relief so far. It is a very individual affliction and this treatment is working for me. Of course we all know that treatments which start out effective can suddenly stop working, so my fingers remain firmly crossed! Good luck to you and I hope this information helps.

[Kaarina Administrator in reply to RupertMac]

Hi RupertMac

Great news that you have found an excellent neurologist with good knowledge of RLS. Can one see him on the NHS as well as privately?

[RupertMac in reply to Kaarina]

Hi Kaarina - yes, I am seeing them on the NHS. It took a while to get the referral and I have spent more time with the junior consultants in their teams (Rimona Weil and Tushar Gosavi) but they have been very good. For anybody going private I think Dr Jarman and Professor Walker are available privately through a practice called Queen Square (qsprivatehealthcare.com/).

[Kaarina Administrator in reply to RupertMac]

Hi again RupertMac,

Thank you very much indeed for replying so promptly with useful information for those that are looking for a good RLS neurologist. Unfortunately, as quite a few members have found out, there are many neurologists but hardly any who know about RLS.

[Hidden]

I live in the north of Ireland and in my experience if i want someone that has a remote clue about RLS I come on here. I have met a couple of neurologists and they know as much about RLS as I do about the inner machinations of the CIA.

In the north we are out on a limb and not bothered with really. IF you want a half decent Dr its London or Dublin. My GP told me neurologists don't have an interest in RLS as there is no money in it and I would find that a very plausible reason!

Unless you need a neurologist to prescribe something you would be better spending your money/time on something enjoyable - that way you know its not wasted!

[RoMB in reply to Hidden]

Hi Raffs, would you know if a good neurologist in Dublin, please?

[18jeffries]

I have also heard good things about the team at Kings College Hospital which is headed by Ray Chaudhuri. My dad saw him last June and after waiting 8 months I eventually will attend for my appointment in April. It will be a long journey to London but as long as it's a productive appointment, I'm not bothered!

[involuntarydancer]

I would be very interested to know of any experts with a good knowledge and understanding of rls in Dublin. The sleep consultant I have told me categorically that there is no augmentation associated with neupro which is cobblers, She refused to prescribe opiates on the grounds that they would make me 'muzzy' when I was in torment coming off mirapexin - she prescribed Lyrica (pregabalin) which was completely ineffective - as anyone who knows anything about withdrawing from d/a augmentation would know. And she never even mentioned clonazapam. I tried to get appointments with two neurologists and they both declined me on the (at least honest) ground that they didn't know enough about rls. I get all my information from this and other boards and the generosity of fellow sufferers cannot be overstated. Fortunately my GP is prepared to work with me and I am gradually getting things under control.

[Heidi85]

I live in kent and saw one in Margate that was fantastic tbh it's just they discharge you rather than follow up appointments so have to wait for a referral again he was the one who diagnosed me after 15 years of suffering and only 2 hours sleep a night if I was lucky.

[Kaarina Administrator in reply to Heidi85]

Heidi,

It may help others if you were willing to provide the name of the neurologist you saw and where in Margate, because a good neurologist who is interested and well informed about RLS appears to be very difficult to find.

[Heidi85]

I'm out atm when I get back I will find my letter share his name with the group no problem

[SLMCP]

I asked to be referred to a new neurologist as my old one was not helping matters and we had a few words. Am seeing the new one in March. Take care.