My PLMD does not go away, whatever I do...I would love to know if anyone has positive experiences with any UK private sleep clinics as I feel I get nowhere with my GP.
Does anyone (Joolsg?) have any recommendations?
Maybe, as Andy Berkowski suggests, below, "PLMD" doesn't even exist, but is a catch-all for behaviours that can't be attributed to anything else.
Dr Jose Thomas runs the Gwent SleepClinic. He is the ONLY doctor in the UK I have come across who is FULLY up to date on RLS and treatments. He stopped prescribing dopaminergic drugs 7 years ago as he realises they all worsen RLS, no matter the dose. He also prescribes iron infusions and low dose methadone and Buprenorphine.So, try to see him at his sleep clinic. He operates privately out of Spire Clinic in Cardiff.
I'm sure there are other good Sleep Clinics, but if they're still prescribing dopamine agonists and NOT prescribing iron infusions, they're not following best treatment.
Thank you Jools, I will try him
Dr Thomas, as referenced by Jools, does both NHS and Private work.
Depending on where you are in the UK you might find another convenient sleep centre, but before making an appointment - unless you get referral advice from other forum members - you'll need to enquire for yourself whether they are up to date on RLS/PLMD treatment. No dopamine agonists, familiarity with gabapentinoids and low dose opioids, iron infusions etc
The following list happens to come from Narcolepsy UK, but it's just a list of sleep clinics. (You'll see for example that Dr Thomas's practice in Abergavenny is the first to come up in the list of two in Wales):
narcolepsy.org.uk/resources...
Good luck with this!
thank you so much for this advice!
I went to the sleep clinic at London Bridge hospital in early 2020 and had a sleep study. The “sleep specialist” would only prescribe dopamine agonists and gave me a prescription for 4mg ropinirole and did not tell me to take the minimum possible—I thought I was supposed to step up to 4mg. So don’t go there 😬
That is terrible. I'm so sorry you had to deal with such out of date advice. He should have warned you explicitly about augmentation and Impulse Control Disorder.
thanks for your reply: very helpful, I will avoid this hospital
PLMD is a neurological disorder and causes significant disability, if left untreated. You need a referral for a Neurologist. If your GP doesn't refer you, try to get a second opinion from another GP. If none of them refers you to a Neurologist, ask them to get in writing why they wouldn't recommend a referral. If a GP is unsure about a diagnosis, they could be found negligent if they failed to refer you to a specialist and you suffered as a result. If your GP doesn't refer you, you can make a complaint and report your GP.
thank you, that's useful to know
I see there is a consultant neurologist who works at Guy's Hospital London: Guy Leschziner: anyone been treated for RSL/PLMD by him?
Hope I'm not too late with this reply. I've seen Guy Leschziner on multiple occasions. He's a lovely person, but still believes in dopamine agonists. Last time I saw him with augmentation symptoms from ropinirole, he suggested I switch to pramipexole. RLS-UK is in touch with him via a journalist with an interest in RLS, so we're hoping to open his mind to newer and better treatments, but as things stand I wouldn't see him for RLS.
RLS or sleep myoclonus?
A good sleeping aid that wont make RLS worse or cause augmentation in the UK?
Gabapentin and new sleep study
Is there a dedicated support function for people suffering with Sleep disorders in the UK?
