Neurologist

[keiralee]

Has anyone consulted a neurologist specializing in RLS in the Kent or London area. Thanks all.

[Madlegs1]

There's a Dr Chaudri in London- but long waiting list. Pippins will have exact details.

[keiralee in reply to Madlegs1]

Yes Madlegs thank you. I have actually googled and came up with 3 names but it will be interesting if anyone comes up with them. Dr Chaudrie talks at RLS UK AGMs and yes I think there is a year's wait.

[Kaarina Administrator]

I have never consulted a neurologist but Prof Chaudhuri, as has already been mentioned, Dr. Simon Merritt, Prof Huw Morris, Dr Peter Venn, Guy Leschziner, Dr Paul Jarman and Prof Adrian Williams are names I have heard of who are in the Kent and London area. Are these names you found when googling?

[keiralee in reply to Kaarina]

Thank you Kaarina. A couple more to add to my investigation !!

[martino]

If you can get referred to the Institute of Neurology in Queens Square inLondon you will find excellent help. I am seeing Prof Bhatia but recently have been seeing Dr Huys who is a clinical associate of his. She has a sound and sympathetic understanding of RLS.

[keiralee in reply to martino]

Has she actually helped though. Has she suggested different meds or combinations of meds.I'm just trying to decide if it is worthwhile consulting someone.

[Pippins2 in reply to keiralee]

Keiralee, I understand where you are coming from. At the end of the day I suppose the main advantage to see a RLS expertis that they are more likelyto prescribe certain meds than some GPS. If they recommend they will write to your GP and instruct them to prescribe.

The only good thing to come out of me seeing a Neurologist (he was useless knew nothing about RLS) was that he instructed my GP to prescribe meds she had previously refused to give me. Also said in the letter "I had a good knowledge and was well able to steer my own treatment " and that could come in useful at some point in the future.

Think you need to have a good idea of what you want to achieve from the appointment. If it is to get a particular med your GP won't let you have then go for it. If you want to request a sleep study then go for it. If your ferritin iron is low and not raising with iron tablets and you want to discuss an iron infusion then go for it...If you want to try the Neupro patch and your GP won't prescribe due to cost then go for it.Another reason to be under an expert is he/she will be amongst the first to know if any new treatments do come out

Otherwise keep in mind there are only 5 main drug classes available the opiates, the Dopamine Agonists, the anticonvulsants, the sleeping pills and meds like Clonazepam and seeing a Neurologist won't alter that but he may be more willing to offer up a combination of these meds which may "scare a GP

Pippins2 x

[keiralee in reply to Pippins2]

Basically what I have been thinking Pippins.

Thank you

[Pippins2 in reply to keiralee]

I am up with you tonight Keiralee it sucks x

[martino in reply to keiralee]

Yes. I think she has a real interest in me and my needs as opposed to being simply a research project. She has twice rung me at home to suggest tweaks to the meds I take. One of the calls was on a Sat evening. She has offered a list of possible meds with a if something doesn't cause improvement try the next on the list.

[Broken_butterfly]

I saw Prof Chaudri and he was brilliant, very knowledgable. However he didn't tell me anything I didn't already know. He went through symptoms etc and suggestions to test iron / ferritin, when all came back normal he diagnosed severe RLS unknown csuse and prescribed pramiplexol (dopamine agonist) also with gabapentin if necessary.

Still waiting for science to develop a cure

[Madlegs1 in reply to Broken_butterfly]

That's actually very interesting--that what we learn on this site and the accumulated knowledge that we all have built up - makes us as proficient as - one of the accepted experts in UK .

Now , where is my prescription pad?😣

[Pollyerrington in reply to Broken_butterfly]

Be careful when they say 'normal' results, if your ferritin is below 90 I'd say you need to get it up to 90 or higher (that's what many neurologists would recommend) check B12 and vit D as well - all culprits in restless legs.

[Broken_butterfly in reply to Pollyerrington]

Thanks Polly. Apparently my b12 was slightly low, I didn't realise there could be a link there. I was on iron supps (which didn't help RLS in the slightest) but dr told me to come off because they weren't needed.

[Pollyerrington in reply to Broken_butterfly]

if your iron is below 90, buy ferrous sulphate from amazon (£2ish) as most people function better at 90+

With the B12 - get sublingual high strength drops - as many people can't process it through their stomachs, if you take the drops under your tongue it enters the body better

[keiralee in reply to Broken_butterfly]

This is what bothers me, will I be any the wiser. He has a long waiting list and even a private consultation takes a while and costs!! We're you a bit disappointed with the end result or did the meds help you.

[Broken_butterfly in reply to keiralee]

Im afraid I can't answer yet as I never took the meds! I will get to that as an absolute last resort x so I suppose a little disappointed that no further investigation could be done or advice could be given. That's the end of the road!