U.K. practitioners?

[Emiloupi]

Any recommendation for U.K. practitioner with a RLS specialisation or interest? I’ve had this my whole life but seems to come and go, at the moment it’s unbearable. I’m not sleeping and because of my constant wriggling, neither is my poor husband. Any info greatly appreciated!

[Hidden]

This is a question I'd have like an answer to myself 18 months ago, luckily I managed without.

I don't think there are any actual dedicated RLS specialists in the UK. I believe however there may be some neurologists or sleep specialists that have an interest. Other members have mentioned them, but I can't remember any detail. I hope they respond to you.

I do recall that members have seen specialusts in London, Sheffield and Papworth.

I saw a GP about 18 months ago seeking help with my augmentation, which she'd never heard of. She recommended I consult a neurologist privately but said I'd have to find one myself. I found it almost impossible to find a neurologist at all and the one or two I found made no mention of RLS.

I hope you have better luck.

As I said, I managed without in the end. This was largely due to the information I got from this forum.

If you were to give detail of what you're going through, then perhaps the forum.can help you too whilst.you're tracking down a specialist.

[martino]

I go to the movement disorders clinic at the UCL Institute of Neurology in Queens Square in London. Over the years I have seen several different doctors there and each has shown a good knowledge of RLS. Coincidentally one is going to phone me this afternoon instead of us meeting!

[Hidden]

I could recommended a neurologist who certainly helped me and really understood WED. Where in the UK are you?

[Emiloupi in reply to Hidden]

Currently in Hastings but my husband is German so we may be heading there if the lockdown lifts, otherwise London will be easy to travel to

[Hidden in reply to Emiloupi]

The neurologist I saw is based in Devon so much further away for you.

Good luck, I hope you soon find help.

[Joolsg]

King’s College Hospital in London has a movement disorder clinic under Prof Ray Chaudhuri. However, waiting list is extremely long and you’ll see a senior registrar.

I wasn’t that impressed as they recommended the Neupro patch after I had been through severe augmentation and bad withdrawal from Ropinirole but I had received advice from this site and Dr Buchfuhrer in the USA by email and was on Pregabalin and Oxycontin by the time I saw them.

They are very useful for writing to your GP to confirm meds like pregabalin and OxyContin can be prescribed.

I’ve also heard good reports about Dr Guy Leschziner at Guys Hospital in London.

In the NE, Dr Kirsty Andersen in Newcastle is quite knowledgeable about RLS.

[Emiloupi]

Thanks for all your replies! I’ll need to write some emails and make some phone calls I think

[coruscate in reply to Emiloupi]

Hi. I had the same problem about finding a neurologist with specialist knowledge of RLS. I knew, through this site, that I was augmenting on ropinirole. I also knew thanks to Minerva, that I needed to get off the DA and start on something else. I told my GP that I wanted a second opinion and he was quite happy with this but didn't know any neurologist who dealt with RLS. I did some research on line and contacted a number of neurology clinics in London. Most were pretty clueless about RLS. The charges vary from around £290 to £850 for a consultation! However, I did contact the clinic of Dr Guy Leschziner who is a neurologist at Guys and St Thomas's. I had a telephone consultation (due to Covid 19) with him within 3 days and he subsequently wrote to my GP advising a DA "washout" and putting me on gabapentin. He also advised that my iron ferrritin level was only 53 and that I should take iron tablets to attempt to raise this. All of this advice has since been implimented and although it is early days, and I am still weaning off the ropinirole, I can feel the benefits. Personally, I found Dr Leschziner very helpful and knowledgeable. You might want to check him out for yourself on line. Good luck.

[Kaarina Administrator]

Dr Simon Merritt may be of help to you if East Sussex is not too far away from where you are. esht.nhs.uk/person/simon-me... He has been recommended by someone in the past with RLS.

[Hidden]

I also found out that Prof Ray Chaudhuri at Kings College has an interest in RLS as does Dr Prasenth Reddy at the same place. No one will have any appointments at the moment due to lockdown but probably if the waiting list is long then maybe a private appointment with them if that is an option for you.