Neurologist Support

[Jauny]

Does anyone in the UK have any experience of privately consulting neurologists that specialise in sleep disorders? I've been considering this but the costs are a bit intimidating. I'd happily pay, though, if there was a certainty of success . I was looking at Dementech Neurosciences in London who have a number of doctors specialising in sleep disorders, including RLS , which I suffer from. Has anyone used any of these?

[SueJohnson]

I do know about Ray Chaudhuri. He is knowledgeable but doesn't believe in iron infusions and tries to put people on Neupro patch which is a dopamine agonist.

Why do you want to see a neurologist?

[Jauny]

I was considering it because I have chronic insomnia and while much of this is related to RLS I don't think this is the only issue. While the nights when I don't have RLS are not as uncomfortable, I can read for example which I cant do if it's RLS, I am still conscious that I don't sleep until about 6am and I'm concerned about the long term effects of this- dementia etc. (My mother had insomnia, RLS and ultimately dementia).My GP just wants to prescribe standard sleeping tablets or anti depressants which just seem to make me worse- wired at night and spaced out in the day.

[Ruffabug in reply to Jauny]

Prof. Mathew Walker at the Hospital of Neurology, Queens Square ( private) specialises in sleep disordrers and RLS . I have consulted with him for my refractory RLS and PLMD and he was very helpful. However I don’t have insomnia so we didn’t touch on that. He is expensive, not sure how much he charges I think around £250, as I was lucky enough to see him on the NHS at UCLH where he does some work. As I am under UCLH for other things ( terminal cancer) he agreed to have a free phone chat. I’m told the waiting lists are long for both, even the private ones but you could inquire. Good luck. Your night sound horrific.

[Jauny in reply to Ruffabug]

Thank you so much for taking the time to reply. That is interesting. The neurologists I found on line are charging £450 for the initial appointment and £150 for subsequent ones...so it's quite a consideration.

[Ruffabug in reply to Jauny]

It may be more. I just had that figure in my mind from previous posts. But my memory is bad so it may well be more. But do find out as he is very goood. Everyone who has seen him says so on this forum.

[Jauny in reply to Ruffabug]

Thank you. I will do.

[HappyGreenBean in reply to Jauny]

Hi Jauny I also see Prof. Mathew Walker at the Hospital of Neurology and haven't found him helpful. He doesn't respond to emails, he also pushes dopamine agonists which are terrible for RLS.

[Jauny in reply to HappyGreenBean]

Right! Thanks! I'll keep clear of him!

[HappyGreenBean in reply to Jauny]

It's up to you - but this has been my experience with him. He's now suggesting Targinact but this has been a battle and in truth it's not a medication I want to take. He can be very stubborn. Others have gotten on with him though. Why he's so patchy, I don't know.