REFERRAL TO NEUROLOGIST

[albax]

Good morning,

I've been on Ropinirole for several years and am experiencing symptoms of augmentation and obsessive behaviour patterns. I'm up to the maximum dose of 4mg a day. I've had a telephone consultation with a GP in my local Health Centre and sent them links to this site, to NICE, and to the Mayo Clilnic. The GP understands the problems with dopamine agonists but isn't authorised to prescribe the alternative because they aren't licence by NICE, even though they are now considered to be preferable first line drugs. They confessed that they lack the knowledge or expertise to advise on the transition to a new regime.

She agreed to write a referral to a Neurologist but the NHS waiting lists are extremely long so I have no choice but to go private.

Can anyone please recommend a good private Neurologist with knowledge of RLS ? I'm not looking to find the cheapest and will travel anywhere to see them.

Has anyone been through the transition from dopamine agonists and can you share your experiences please?

Many thanks,

Alan

[SueJohnson]

Put augmentation in the search box at the top right of this page to see lots of posts by people going through it. I have already given you advice on how to come off it.

Our Moderator has a list. These are some of the names:

Prof Matthew Walker, Neurological Sleep Disorders NHS/Private Queens Square

Dr. Guy Leschziner at Guy's Hospital

NHS/Private Professor Huw Morris, Consultant Neurologist - at the Royal Free Hospital, National Hospital for Neurology and Neurosurgery and UCL Institute of Neurology

[Joolsg]

Hi Alan,The most knowledgeable doctor I've come across in the UK is a sleep doctor, Dr Jose Thomas at Gwent Sleep Clinic. He stopped prescribing dopamine agonists 6 years ago because of augmentation and Impulse Control Disorder. He knows the Mayo algorithm and, quite rightly, treats iron issues before prescribing meds.

The only issue may be getting alternative meds issued on the NHS through your GP. Dr Thomas prescribes methadone and Buprenorphine for refractory RLS and getting these prescribed locally may be problematic.

Have a chat with your GP and ask if they will prescribe whatever Dr Jose Thomas recommends. Otherwise, you may have to pay for a private prescription, but methadone and Buprenorphine are cheaper than most other meds.

g.co/kgs/bpTswD

[Kaarina Administrator]

Hi Alan

Mr Christopher Murphy - is apparently well up on RLS and runs a Sleep Clinic recommended by username phantom388 in March 2023 and also CED60 in April 2023.

You could private message these usernames to ask more about these Sleep Clinics.

I understand Dr Jose Thomas, mentioned above, does telephone conversations which could prove helpful to you.

Lister Hospital, Stevenage, Herts Sleep Clinic was recommended by username DickJones in August 2022.

I do have a few names including those SueJohnson has mentioned above but as to how up to date and knowledgeable they are about RLS at this present time is not certain.

[Kaarina Administrator]

There is a sleep clinic in Sheffield sth.nhs.uk/neurosciences/ne... but whether they would prove helpful to you is also not certain.

[67Waterman]

I go to Prof Matthew Walker, Neurological Sleep Disorders NHS / Private, Queens Square, National Hospital For Neurology and Neurosurgery, but had to wait a year on the NHS waiting list. But he knows his subject, and if you could afford a first private consultation and then ask to go on the NHS list ??

[Munroist]

Dr Robin Fackrell at Bath Sulis Hospital was good. He was sympathetic, knowledgeable on the subject and all the various medications and recommended an iron infusion for me which is what I wanted. I am now waiting for my GP and the NHS to actually arrange one.

[Kaarina Administrator]

Although the following link is two years old, DickJones has just replied today to Firenze1 who asked him if he did eventually get to see a neurologist. Thought it may be of help to you......

healthunlocked.com/rlsuk/po...

[albax in reply to Kaarina]

Thank you very much.