Sorry if all this is old hat (I'm back after a few years away) but I am concerned about the number of people on this site who have trouble with a correct diagnosis and seem to be waiting for referral to neurologists. I thought it was only an american thing but it seems to be british too. Why a neurologist? I was successfully diagnosed and treated years ago by a simple visit to my GP and then referral to a local sleep centre. Result: no neurologists or expensive private medicines. Expense: a bus ticket once a year and prescription charges (for the under 60s).
So dear RLSers, if you haven't been referred to a sleep centre yet, give it a go; it's free and on the NHS!
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Stoutfellow
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Welcome back. Glad the system works so well for you and long may it continue. I am in UK as well and in the area in which I live there is a three year waiting time for a neurologist. There is also, by the way, a three year waiting time for a vascular surgeon and a two-and-a-half year wait for a Pain Clinic.
I do not know if you are now able to referred directly to a sleep clinic but a while ago this could only be accomplished by first attending a neurologist. Personally I have had two sleep studies undertaken (one privately because of delay) and both were a waste of time as I was unable to sleep enough for the data to be useful in making any sort of a diagnosis.
I augmented within weeks on a DA, gabapentin and pregabalin caused extreme side effects and so I am now reluctantly on an opioid.
OMG! I'm so sorry. My comments seem somewhat flip when, clearly, you are at the severe end of RLS illness. One issue your reply raises is a possible "postcode lottery" of RLS/sleep condition treatment. Clearly, I'm a lucky one with facilities nearby and it not being (too) overburdened. Although outside the remit of RLS-UK, we, perhaps, need some sort of campaigning group to ensure that, where-ever they live, RLS sufferers can access the treatment they need easily and in a timely fashion. It is an utter disgrace that you have to suffer in the way you do. I can only hope your situation improves soon.
So what treatment has worked best for you? I am reluctantly on opioids , as AP drugs don’t work and GABA has horrible side effects . I’m curious if there is a new treatment regime .
Hi Raffs. I have double sided sciatica from spinal stenosis and lumbar disc problem. Apparently the hospital is able to tell from your GP referral letter whether your extreme pain is urgent or can wait!!!! Obviously they thought that mine could wait even though when the letter was sent I could not walk more than ten yards. Thankfully I was able to afford the help of a very good physiotherapist and with a lot of exercising on my part even through all the pain I am now able to get about pretty well although I have the pain at some time every day. The hospital obviously needs a better crystal ball!
I would well believe there are certain phrases incorporated into letters - "thank you for seeing this person who is anxious about their pain" might say - "They're neurotic, don't worry too much about them!"
Neurologists SHOULD know about RLS. RLS is a neurologically based movement/sleep disorder. My GP says she has learned everything she knows about RLS from me. lol It depends on the actual doctor and whether they are interested in knowing more about RLS or not. So, a sleep specialist can be good, a neurologist or a GP. IT all depends on THEIR attitudes about it. I had a neurologist who knew NOTHING, so he was fired. lol My GP is now "trained", so she is my one and only. I have had 3 sleep studies done, but a sleep study only diagnoses sleep apnea and/or PLMD (Periodic Leg Movement Disorder) PLMD is involuntary movements in your sleep. RLS is the URGE to move that you cannot ignore while awake. So, a sleep study is a good idea to rule out apnea or PLMD. RLS is a clinical diagnosis, which means your doctor diagnoses you by your description of your symptoms.
Did they really help you? If so how ? I’m already on premipexole (May not have spelt it right) but im getting desperate mine is spreading and sleep is becoming more and more elusive
Been in your position and it was Augmentation. Please do look it up - it's in the pinned post top right.
I managed to get off Dopamine agonists in 2016 and I am so glad I found this site, found out about augmentation and got on to other meds. The spreading of RLS and lack of sleep on pramipexole are both signs that it's no longer working and has "turned" on you.
Slow withdrawal is the best way to get off it.
Better meds are available- pregabalin or gabapentin and if they don't help, low dose opioids.
Read all you can then see your GP to discuss a safe withdrawal.
Sorry Manerva but I have to disagree. I was referred to a sleep centre by my GP. I have suffered from "kicking legs" since a boy. I was referred 'cos of loud snoring. At the sleep centre they not only diagnosed sleep apnoea but also RLS. My condition had a name! Better still, can you imagine the utter joy of my first night (after taking the meds) without legs kicking or my leg being rigid?! It's not always been perfect - are we ever that blessed - but I owe it all to the sleep centre (and my long-suffering missus of course!).
The only way a sleep centre would diagnose RLS is if you were awake and needing to move your leg/legs. If you were asleep and kicking in your sleep, then the sleep centre would diagnose that as PLMD which happens while you are asleep. RLS stops you sleeping and its diagnosed by explaining your symptoms to a doctor and the doctor looks at the criteria for RLS and see if your symptoms match, the important part of being diagnosed as having RLS is the urge to move, and you are awake for that.
Cheers Elisse. I suspect I have both! I also suspect that, at the time of my diagnosis, the doc concerned thought that restless legs syndrome would be enough for me to understand and used that (specifically incorrect) expression. Doctors can be a tad patronising at times! Nocturnal movements were detected during my sleep so I must have PLMD but I also suffer from kicking legs at certain other times of the day (and on cramped vehicle journeys) so must have RLS too. Taking all this into account, it gets worse in the evening, so is that RLS becoming PLMD? Whatever.
That sounds reasonable, you had kicking legs and loud snoring i.e. signs of sleep disorders. So you were referred to a sleep clinic and they found that you had sleep disorders, but incidentally also had RLS unsuspected.
I went to my GP with RLS symptoms, not signs of any sleep disorder. He referred me to a neurologist who diagnosed me as having RLS and gave me a prescription that worked. That seems reasonable to me.
You asked why don't I go to a sleep clinic, why should I? You asked everybody generally why don't we all go to a sleep ckinic. Why should we all. We're not you.
It might have been less patronising of you to have simply stated that you found a sleep clinic helpful rather than asking "why" we didn't.
As I used to say to my father when he asked me "why" I didn't do something, "I can get things wrong without your help, thanks".
Sorry, you weren't asking us all, just the British.
Hi Manerva. Very interesting and, for me, quite humbling. I'm sorry if I caused offence to anyone or came over as patronising. That was not my intention. I have learnt a lesson here and that is that, as you point out, we are all different.
I, rather stupidly with hindsight, based my comments on my own experience which were sleep disorder related. Now I understand that RLS can exist in people without a sleep disorder. They then would take a different route to treatment and could end up seeing a neurologist.
The added complication is my lack of knowledge of how patients are treated in America. Perhaps, again in ignorance, I think that for every genuine medical practitioner over there, there are others who would rip you off with some new promise. Over here in the UK we don't have that luxury (?!). Getting to see a medical specialist can be a long old wait (for those of us not wealthy enough to afford private healthcare). My aim in asking British people why they weren't using their sleep centres was in an effort to potentially save them time. I couldn't ask non-Brits as I don't know how your system works. My guess being that the USA has no free, open to all sleep centre service. Again, apologies to anyone offended by anything I wrote and thanks for your candour and frankness. It is only by listening to others and their (sometimes positively critical) comments that we can learn, communicate and move on more effectively.
Well glad to here it mate...in the good ole USA nothing is free...when it comes to medical care for the masses the politicians have the masses convinced that they
are not worthy of medical care and they believe them...Yes hard to believe but it is true. I went to my GP told him I had RLS and what i needed he stated well this is like chasing one pill after the next. Went and saw a Neurologist he said yep I was right...RLS it was and it is going to be one pill after the next...but I have had it for like 6 years or so...Still on the same stuff...no augmentation...no addiction where I have to keep taking a higher and higher does of narcotics...nope same meds...As the Pain Specialist states if it aint broke no sense in fixing it.
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I had a neurologist who knew NOTHING, so he was fired. lol My GP is now "trained", so she is my one and only. I have had 3 sleep studies done, but a sleep study only diagnoses sleep apnea and/or PLMD (Periodic Leg Movement Disorder) PLMD is involuntary movements in your sleep. RLS is the URGE to move that you cannot ignore while awake. So, a sleep study is a good idea to rule out apnea or PLMD. RLS is a clinical diagnosis, which means your doctor diagnoses you by your description of your symptoms. 
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