Neurologists - supposedly our saviours.

[dickJones]

The leading question: does anyone know of any RSL/PLMD-friendly neurologists who are both personable and knowledgeable? I'm in Herts so London and the South-East would be favourite.

[Joolsg]

Not many sadly. However, there is Prof. Ray Chaudhuri at King's College in Denmark Hill, Dr.Guy Leschziner at Guy's Hospital and several at the Hospital for Neurological diseases at Queen Square.That's why RLSUK is running the RLS education campaign. We need more knowledgeable neurologists and all doctors need to be taught about it. At the present time it's not taught at all, hence the ignorance amongst GPs and neurologists.

[Kaarina Administrator]

This is the link Joolsg is referring to healthunlocked.com/rlsuk/po....

[Kaarina Administrator]

Here are a few names that other sufferers have recommended in the past besides the ones Joolsg mentions.

Queen Victoria Hospital, E. Grinstead NHS Dr Peter Venn, Consultant/Sleep Medicine

Royal Free & National Hosp for Neurology Professor Huw Morris, Consultant

& Neurosurgery & UCL Inst. Of Neurology Neurologist & Prof of Clinical Neuroscience

NHS/Private

Guy's & St Thomas' London Professor Adrian Williams, Clinical Director & Consultant Sleep & Respiratory Physician NHS

National Hosp for Neurology & Neuropathy, London, Queen's Square Dr Paul Jarman, Neurologist,Movement disorders and Prof Matthew Walker, Neurological Sleep Disorders NHS/Private

Royal Brompton, Chelsea, London NHS Prof Anita K Simonds,Consultant in Resp/Sleep Medicine

London Bridge Hospital , Mr. Muza Rexford, Specialises in sleep disorders and RLS

Private/NHS

Sleep Disorder Centre, Nuffield House, NHS, Dr Patrick Murphy, Neurologist

Guys Hospital, Gt Maze Pond, SE1 9RT Tel: [phone]

Kings College Hospital NHS/Private Dr Prashanth Reddy, Consultant Physician

[dickJones]

Many thanks, both. I have some of these names, but many others are new to me. Are there any patient reviews of any of them? I'm a firm believer in the principle of 'bedside manner' as completing a specialist's portfolio. Medical knowledge and expertise are, of course, the first requirements. But without a genuine personal interest in and sympathy for the patient, the specialist is little more than a highly skilled engineer. RLS/PLMD are peculiarly stressful conditions and the physical/mental health interface is a crucial consideration for the doctor.

[StarsAtNight]

Good luck in your search Dick for a well-informed and understanding neurologist! Can't give you any on-the-ground recommendations as I am in Australia. But my experience is not very encouraging.

Over 25 years or so I've seen about 5 or 6 different neurologists. The first one, at a hospital sleep clinic, prescribed the drug cabergoline which zonked me out so much that I had to take the following 2 days off work. Then he started me on Ropinirole, and as we know, that's a whole other sad story.

The second last one was not only the most expensive but also the most arrogant of the lot. I really disliked him and felt completely ripped off.

The last one, whom I'm still loosely attached to is a fairly understanding guy at a sleep/respiratory clinic but he still follows the standard protocols. They all tend to specialise in other more conventionally serious conditions such as Parkinsons and MS etc and RLS is just not considered in the same league.

Interestingly, the only doctor who has ever expressed real compassion and concern was a Palliative Care specialist - I got referred to him by my local GP as he is authorised to prescribe medicinal cannabis. Turned out though I couldn't take the cannabis oil as it had a component of THC and it is illegal to drive with even a small trace of THC in your blood here.

So, in truth, I find forums like this far more useful than consulting a specialist.

[dickJones]

I'm too ancient to be prepared to waste time with unsympathetic doctors at any level of expertise. I got myself into brief trouble at my surgery for ending a consultation abruptly because of a GP's failure to take seriously my health anxiety, which was at that time acute. I queried why she'd chosen general practice when she appeared to be interested solely in the condition within and not at all in the human being wrapped around it. But many others complained too and she left the practice. Just like you who are reading this (I hope!), I have to fight off depression because of the generally enervating and specifically sleep depriving nature of RLS/PLMD. The very first thing we require from our doctors is some level of sympathy and concern. If nothing else, it takes the edge off their ignorance about our conditions!

[Gmc54]

Maybe we could compile a list of such neurologists, not just for the South, but also the rest of the UK that members here could easily access. A pinned post maybe?

[LotteM in reply to Gmc54]

Kaarina keeps a list. And posts it occasionally. Good idea to make a pinned post.

[Hidden in reply to Gmc54]

Yeaaaa! The North West is a virtual medical wasteland. People flock here (when allowed) to enjoy the lakes, but getting good doctors to come and work is a problem. A problem that the local trusts admit to.

Anywhere north of Preston, forget it.

In 2019 a GP advised me to see a neurologist privately, but left me to find one for myself.

The only one I could find was the same one who diagnosed my RLS 12 years ago and set me on the road to augmentation and had a bad reputation then. And still has.

[Gmc54 in reply to Hidden]

Not just your area I'm afraid. I live in South Lincolnshire and we really struggle even to get GP's. There is just nothing here for them. Lucky you living in the Lakes! 🙂

[bill54321]

Unfortunately, most are parrot. The have all learned from the same studies done on night time patients and do not have any inclination to tackle hard questions. It is obvious to me as a day time jerker, that mal-practice enters into practicing Physicians meds all lead to augmentation eventually. Not having help is not an option. The truth is, we need more research but no one is inclined to take it on. Stanford University did their mental work and discovered 20 new brain barrier proteins. Who is following up? Mean while, listen to the more knowledgeable people on this form like Manerva who can give you more than most specialist. God Luck

[dickJones in reply to bill54321]

Thanks, Bill. Frustrating, isn't it? We'll have to wait for Elton John or Taylor Swift to succumb and maybe the rest of might benefit from dollar millions of funding! Take care, Dick.

[bill54321 in reply to dickJones]

I may challenge Stanford University to take this on.

[Firenze1]

Hi Dick. Did you ever find/see a neurologist? I'm in Essex so your area, roughly.

[dickJones in reply to Firenze1]

Hi Firenze. I’ve never had recourse to a neurologist. If I need heavy duty backup at my surgery - e.g. for an off-licence med titration - I contact the doctor in charge of my sleep study at the Royal Papworth, Cambridge. He’s been very helpful in moving me into and through the dosage process of Buprenorphine sublingual tablets. Where the GPS were scared of the possibility of litigation should I become addicted to an opioid on doses of 0.6 mg (!),he read the American literature and then stood surety. He’s a good man - Dr. Mike Davies. I’m in North Herts so if I could get a sleep study done at a Cambridge hospital, so might you.

[Firenze1 in reply to dickJones]

That's interesting, thanks. How would I get to see Dr Davies? Papworth isn't that far from me at all

[dickJones in reply to Firenze1]

Just ring the Papworth and ask for Dr. Mike Davies’ secretary. Then make an appointment for a full sleep clinic checkup.

[dickJones in reply to dickJones]

NB my response below. Dr. Davies doesn’t seem to have a personal secretary so use the email a/d I’ve provided below.

[albax]

Is Dr Davies a good starting point when looking for a first specialist consultation on RLS? My GP agrees that I need to see a specialist but doesn’t know who.

[dickJones in reply to albax]

My main reason for seeking a sleep test at the Royal Papworth was to check the efficacy of my CPAP pump and mask - I also have sleep apnea. But it was also to record both the number and the intensity of my nocturnal PLMs. Some time after the test, when my GPs were reluctant to apply the MayoClinic and Massachusetts reports on opioids and their efficacy in treating RLS/PLMD, in desperation for an authoritative third-party to give the thumbs-up, I wrote to Dr. Davies, sending him the same data and acknowledging that their findings were American and thus not officially applicable in the UK. He wrote to my practice and ratified both the medication - buprenorphine sublingual tablets - and the dosage, 0.6 mg. So you’d need to contact Dr. Davies and essential ply follow my route. If you coukd get an appointment the process would be protracted. And he may be reluctant to stand guarantor for another patient struggling with GP obduracy. Worth a try, though, so good luck if you decide to go in that direction.

[Firenze1]

It sucks. I'm feeling desperate 😟

[dickJones in reply to Firenze1]

Hang in there! Project managing your own RLS/PLMD is hard work, but in the face of GP ignorance and obduracy we have to put in the legwork!

This is the email a/d via which to make contact with Dr. Mike Davies: [e-mail]

Explain to him that your GP requires consultant level backup to process your request for Buprenorphine sublingual tablets. State your readiness to undertake a sleep clinic test at the Papworth if it’s necessary to confirm your condition prior to opioid prescription. It might be an idea to include in your email two links availabile via this forum - the MayoClinic recommendations re opioid dosage parameters and the Manhattan General Hospital findings on opioid usage and RLS. I don’t have them to hand, but an enquiry here will reveal them (or Joolzg or Sue Johnson will provide them because they must know them off by heart by now!) There are no NICE directives on the off-licence use of Buprenorphine so this (excellent) American data is all that we have.

It’ll take time for this to go through so in the meantime keep looking for a friendly neurologist (something which, incidentally, your GP should be doing for you!) Time again will be an issue; appointments usually take months to set up. Nothing’s easy with these two awful conditions, but keep in touch with this wonderful forum, never take no for an answer from your practice, be bloody-minded because you’re entitled to treatment, and you’ll get there, my friend!