Hi Folks
What with the world going to poop I’ve not been around here for a while. I’m in the uk and finally being referred to see a Neurologist as the pregabalin isn’t working anymore and my GP won’t increase it any higher than the 300 a night I’m on what might I expect on this first visit?
To be honest, I don't think that's a very good question to ask.
It might be a lot better to ask, how are you goint to prepare yourself for this appointment?
I'll say more later.
Hi again,
perhaps you could tell us more about your situation.
When were you first diagnosed with RLS?
What treatment were you advised and had? What drugs have you been prescribed and taken, what doses and for how long? What happened with them?
As much detail as you can.
This will give an indication of any possibilities that might have been missed, what might have gone wrong and what your future options are.
This may enable us to give you further information and support that could help you make the best of your neurology appointment.
It would also be of great help if you state what country you live in. This can make a big difference.
I look forward to your reply.
Hi Effindoe, he does say he's in the UK, or do you need more specific (ruling out the likes of NI))
Thanks, I did miss that, when I first read the post.
I hope I'm clearer now.
There is an opportunity when joining HealthUnlocked to state where you live in your profile.
When you do that, whenever you start a new thread, it says underneath your first comment "Written by" then your username PLUS your gender, age and country.
Otherwise unless somebody specifically states their country, gender etc in what they write, which many don't, you have to try to pick up clues, e.g. like they say GP rather than PCP ( possibly UK rather than US.) and so on.
It may not seem that relevant, but I like to give country specific and gender specific information and use country specific language in what I write . This can avoid me making as many misleading comments.
For example, I have access to some UK infirmation which has great authority in the UK. But it's only any authority IN the UK, plus, the web sites are NOT accessible from outside the UK.
You can only access these sites from a UK IP address
example
cks.nice.org.uk/topics/rest...
Perhaps, I spend too much time in this forum and write too much. I hope what I write is helpful and not too miskeading.
I don't rate what I've written in this particular post as being entirely positive. I may have caused some upset.
My apologies if you've found this the case.
You may have gathered that I may be writing sometimes just to occupy myself. E.g. now 6.40 my time, awake since 5 am. I am not able to do. much physically.
I'm a mental person.
I really value your input and am so glad you spend so much time on this forum. You have been a great help in this new journey for me.
Hi Effindoe, I have not found any offensive words from yourself, and I am certain I am not alone. Probing, maybe, to get the right info so you can give an informed reply.
I'm one that can sit beside you in a pub, and really listen to you. The medical Dave Allen if that makes sense (hoping not to offend).
I think the next round is mine, what are you having? (Please don't say teetotal).
Just the one Mrs Wembley
Thanks for the drink, a nice very dry white wine suits me.
I make my own gooseberry special.
So dry it evaporates before you can swallow it.
Avoid naked flames!
I second that. I find your advice invariably clear, well reasoned, and immensely helpful. Your medical knowledge is outstanding: are you an MD?' Regardless, I’m so grateful for your commitment and generous sharing of your knowledge . I think I speak for all of us when I say a heartfelt thank you.
Proof positive of the old adage that knowledge is power.
Hi as I said I am in the uk Yorkshire to be more precise. I had been on pramipexole for around 8 years then augmented so painfully weaned off over 6months started pregabalin been on 300mg a night for about 2 years and not working very well now GP doesn’t want to up it anymore and has referred me for a neurologist appointment
Pregabalin and gabapentin often don't work for those who have suffered augmentation on Dopamine Agonists according to Drs Buchfuhrer and Winkelman. I'm one of them. Gabapentin and pregabalin did nothing for my RLS.The neurologist may suggest putting you on another DA like Ropinirole or the Patch so be wary as most neurologists have very little knowledge of RLS.
Read as much as you can, buy 'Clinical Management of RLS' by Drs Buchfuhrer, Hening, Allen and Lee, second edition.
Your next options if pregabalin is not helping would be a low dose opioid like Targinact or Codeine or Buprenorphine.
Hi, yes I see you're in the UK.
That gives options for country specific suggestions.
NOTE members come from UK, US, Netherlands, Belgium, Spain, Canada, South Africa, Australia, New Zealand, India, Pakistan etc.
Oh and Northern Ireland and Ireland.
OK, yak! the dreaded pramipexole
Well done for getting off that.
To confirm, after augmentation the gabapentinoids have reduced value because of the damaged caused by pramipexole, a dopamine agonist (DA).
ALL DAs do this, ropinirole or rotigotine (patch).
For YOU, pregabalin is not working. According to the criteria for specialist referral your GP is correct. The usual is to a neurologist. Another possibility is a sleep specialist.
I can't tell you what to expect.
Without dwelling on it too much I can tell you the possible extremes.
The best 10/10
A warm welcoming manner.
Appears to have familiarised themseves with your case.
Listens attentively to all you say, without interrupting.
Gathers some personal information from you including your background and family.
Asks about your general health and medical history.
May carry out a brief neurological examination, e.g. reflexes, muscle strength etc.
May ask you about your symptoms, (possibly with reference to the RLS diagnostic criteria).
Identifies any further investigations or tests thay may want to carry out. Explains what the tests are for and what the results might indicate.
Advises you on a treatment plan.
This should follow the guidelines on shared decision making and consent, (General Medical Council 2020).
This should adhere to the "BRAN" criteria.
The Benefit of any treatment advised
The Risks of these
The Alternatives
What happen if NO treatment is accepted.
Explains everything in terms you can understand and checks your understanding.
Gives you opportunity to ask questions and to say anything else you want to say.
Asks you if you agree with the treatment plan and allows you to choose between options.
The worst 1/10
Cold manner. Poor eye contact. Poor listening.
Asks very little personal.
Tells you what treatment you should have, with little verbal information about BRAN.
No opportunity for questions or discussion.
The UNACCEPTABLE - minus!
Fails to mention the risks of all treatments
Fails to mention alternatives.
Fails to make sure you have understood.
Fails to have checked in any way that you agree to any treatment.
The unacceptable is actually unethical and illegal.
It's up to you to decide what level you'll be satisfied with. 5 maybe. Minimum for me is that they are respectful at least.
This is why I say it's better to prepare yourself for the appointment.
Some tips
The whole situation can really wind you up!
You may be waiting months. You don't know what to expect.
You arrive on time, but are kept waiting.
You may have questions rehearsed, then forget them all.
You may feel you have no control over the situation.
You may feel that you are totally dependent on the Dr doing what's best for you without any means of judging that.
SO.
Rehearse some strategies for keeping calm.
The specialist is a human being, they're not your enemy, they don't have any malicious intent. Their conduct may be more determined by their circumstances than their personality.
Take somebody with you for moral support, (if allowed covid 19).
Write down any questions you may have.
Don't just psssively accept everthing they say, think about it.
Don't be aggressive. Don't go in there with fixed ideas about what you want and demand you get it! Be open to possibilities.
You do NOT have to agree there and then.
A few other points. A neurologist is a specialist in neurological conditions. They're not a specialist in RLS!
Ultimately, any drugs you're prescribed are purely at their discretion. They are legally responsible for the consequences. What they can prescribe may be restricted. They have to consider what's appropriate fo you as an individual, taking into account your medical history, general health, other medications and ability to comply with treatment requirements.
They're not just there to give you want, they're there to give you what you need, safely.
What you may really want is to simply go there, be told what to do and feel you can trust it will be a great result.
It can happen, but I don't know what the statistics are.
OVERALL I'm not going into a detailed account of what drugs you need.
I will however give you some information abouts what's reasonable.
RLS should be diagnosed according to the validated internationally recognised criteria.
irlssg.org/diagnostic-criteria
The UK law of informed consent and mental capacity act give you the right to take treatment voluntarily or withold consent.
The management of RLS has 4 aspects
1) Iron therapy
2) Consideration of aggravating factors
3) Drug therapy
4) Self help. Exploring strategies for coping and reducing RLS risk factors.
1) and 3) are covered in medical recommendations.
2) are covered superficially in medical recommendations. Further detailed information is available elsewhere.
As a minimum, I suggest reading and absorbing information in the following links
cks.nice.org.uk/topics/rest...
mayoclinicproceedings.org/a...
NOTE : You have "refractory RLS"
bnf.nice.org.uk/drug/oxycod...
Good luck!
How about stressing the positive compared with all this negative? The neurologist might be wonderful. Some drs are!
Hi yes you make a good point. Hages neuro may be brilliant. He asked what to expect and I've tried to give a balanced view.
I don't consider all I've written to be negative. I can't actually see much that's so negative.
Some Drs don't need to be a a neurologist to be brilliant.
I recently saw my favourite GP, who I find outstanding. Totally ignorant about RLS!
I've also met many other outstanding doctors.
My positives would be the 10/10 doctor I outline above.
It's not necessarily a matter of knowledge.
I do appreciate that Drs aren't always adequately trained or supported in their difficult roles, especially and may feel inadequate or powerless to fully cater for their patients' needs.
I offer tips to people, on how to be prepared for seeing an consultant.
I'm not a doctor knocker like some members.
I consider its our job to educate these Doctors. My GP practice have welcomed me speaking to them and have followed links I have given them to inform themselves. I have just handed them a copy of the newly published American RLS's Foundation publication written to inform medical professionals. It is excellent. I have also worked with my neurologist in the same way.
If we show a positive, informed attitude, we can influence medical professionals. I found them surprised and curious as I worked with them. WE HAVE TO begin somewhere.
I have also spread around Jools' article in the Lancet and also her conversion with .. ?? .. which is online and very informative.
Hils
Did the neurologist confirm the RLS? What happened on the visit? I attend the National Hospital in Queen Square London.
Apologies for not reading your question properly. I don’t suppose there is a standard procedure. Your GP would have said why you were being referred and the neurologist would try to diagnose the problem.
There is a standard.
It's part of the referral criteria that when a GP diagnoses RLS and prescribes first line medications such as pramipexole followed by pregabalin which have failed, as in Hage's case, that they do get a referral to a specialist. (NICE 2020). Otherwise, the national criteria aren't met.
GPs should be expected to diagnose and treat RLS with first line meds.
Sometimes they just pass the buck up without doing this. That happened in my case, frustrating for me and frustrating for the neurologist.
Thinking back the GP in my case did what was required. We tried Ropinerole then Pramipexole, neither of which suited me, then I turned to Rotigotine which I am still on. Is there a standard procedure with the neurologist?
My GP said he’s out of his depth with RLS
He probably is and it's to his merit that he admitted it.
The links I gave you earlier however contain information your GP could have used, but all being well, any neurologist you see will take note of these and they can prescribe things that your GP couldn't. i.e. the high potency opioids.
Not that drugs are the only consideration.
I would say that should any neurologist show no cognisance of particularly what the NICE website says, that would be cause for concern.
Have you any idea at all when you might get an appointment?
In the meantime your GP could still help e.g. by carrying out blood tests for serum iron, transferrin saturation, ferritin and haemoglobin. That is, if he hasn't already done these.
Has he advised you about iron therapy?
Has he discussed any other medicines you may be taking with you to identify if they're making your RLS worse?
Has he discussed taking say a benzodiazepine to help sleep?
If you look at both the NICE guidance and the Mayo clinic links then these things are clearly identfied and easily within a GP's scope.
As regards iron, all the GP has to do is the blood tests then give you the results.
Based on those results you may be able carry out your own iron therapy
Basically if all these results are "normal" then you just need to know the exact result for ferritin, the number.
If this is less than 75 then you can start taking an oral iron supplement. An over the counter supplement is better than a prescription iron -and so on. Which one to take, how to take it an what to expect from it is useful to know.
See more information in the links.
The main aggravating factors which make RLS worse are other medications.
These are the main ones
Antidperessants
Sedating antihistamines as in neuroleptics, cough medicines, some anti-nausea meds, sleeping aids and anti-allergy meds.
Dopamine antagonists as found in some anti-nausea meds
Proton pump and H2 inhibitor anatacids
Some statins
Some Blood pressure meds and diuretics, inc beta blockers.
In some cases exploring the above and taking appropriate action can either reduce the need for RLS meds and in some case eradicate the needs for meds.
Finding other aggravating factors comes under 4) Self help
You'll find neither GP nor neurologist of help with this!
This means finding these out by looking things up.
Lookup RLS and vitamin B12, RLS and vitamin D, RLS and probiotics, RLS and anti-oxidants.
The role of alcohol, sugar, caffeine, nicotine and other stimulants in triggereing RLS
Influences of diet and bowel inflammation on RLS, food sensitivities and inflammatory bowel conditions, IBS, SIBO, H Pylori bacter.
The more informed you are about the recommended drugs for RLS are when you see the neuro, the better. Also about what to drugs to avoid which they may possibly advise which in fact may make things worse e.g. yet more dopamine agonists, quinine, amitryptyline, melatonin and any other drug that isn't mentioned in the Mayo clinic recommendations.
To get back to your original question, I wouldn't expect to get too much out of your appointment really, unless he/she is a number 10! The best thing they may offer is a low dose high potency opioid. They might not agree with that.
to
Generally speaking, even regular neurologists have little knowledge of RLS, you need a neurologist that specializes in movement disorders. Neurologists will load you up with dopamine agonists which will only make you worse over time. You should insist on a referral to a neurology specialist.I hope it works out for you, best of luck!
Hi, unfortunately it differs in different countries. This is very frustrating!
Here neurology specialists specialise in neurology, that's it. I'm not aware of any being movement disorder specialists precisely.
Even so there are many movement disorders, so what would be really great would be a RLS expert as you have in the US. Some of these are sleep specialists.
Sad to say, no such luck.
The World Health Organisation classes RLS as a "sleep related movement disorder" one of 12!
Movement disorders are a sub-class of neurological disorder. 9 disorders are identified.
None of these are related at all to RLS.
I am being seen by a neurologist who is part of a movements disorder team
Ah, thanks for telling me.
I see now RLS and PLMD both come under "sleep related disorders"
Things like Insomnia, hypersomnolence, sleeping related breathing disorders etc.
and
"Movement disorders"
Things like Parkinsons, choreiform, dystonia, tics, PLMD etc
You've revealed a whole new aspect of the WHO classification of diseases to me.
Interesting
This is why some people get referred to a neurologist and some to a sleep specialist.
I'm not sure who gets the best deaL
You'll have to let us know how you get on.
I can always learn omeyhing new.
I've always been referred to a neurologist.
Perhaps a sleep specialist would have been better.
My GP said RLS isn't a sleep problem. Was she kidding?
There appears to be no National Service Framework for RLS.
I'm guessing then that what any individual neurology consultant decides in relation to RLS will depend on their own individual knowledge and experience.
Sorry to have earlier misinformed you. RLS and PLMD are classified by the WHO as both "sleep related Movement Disorders" and as Neurological "Movement disorders"
This may explain why some people are referred to a neurologist and some to a sleep specialist.
I'm not sure which is best.
It's not uncommon in the UK to hear neurologists aren't very knowledgeable about RLS and sleep specialists appear to be less common.
In the states we have neurologists, that know very little about RLS and prescribe dopamine agonists that eventually make you much worse, and we have specialty neurologists that deal with only movement disorders. (Parkinson’s, dystonia, RLS etc). I have seen both and only found relief from my Movement Disorder Neurologist. I saw several neurologists before being referred to a specialty neuro. My life has been completely turned around with Methadone RX. The four neurologists that I saw prior, knew nothing about RLS and the prescribing of methadone.
I'm actually just discovering the same in the UK, there are neurologists who may specialise in movement disorders and there are sleep specialists for sleep related disorders.
I get the impression thst there aren't as many sleep specialists.
Whatever they are, you'd expect them to have some expertise, experience and knowledge about RLS.
I gather however that RLS is not a high priority condition in a speciality that itself isn't a high priority.
I guess that neurologists don't actually come across that many RLS sufferers to gain a great deal of expertise.
Most case of RLS can be dealt with in primary care. It's only really those with refractory RLS that need more specialist care.
I guess it take time for developments in medicines to get around. There are still Drs in the UK prescribing harmful DAs despite all warnings and despite the alternatives.
You may have noticed that RLS -UK started a campaign for Education of GPs in the UK.
This was aimed at gettting more training for GPs in RLS management.
It basically ground to a halt.
The messages coming from the major UK health education organisations were fairly unanimous in that introducing a low priority condition into an already crammed curriculum isn't simply feasible.
However, it was emphasised that when GPs in the UK come across patients whose conditions they feel they know little about, they are obliged to inform themselves. If this were so then they wouldn't have to unnecessarily refer people to neurologists when they could deal with the RLS themselves.
It's my view that we as sufferers also need to take more responsibility for those aspects of care we are capable of carrying out if we knew sufficient.
This may be a matter of developing resorces to help and support sufferers such as this forum and the HealthUnlocked organisation.
We can make it a priority .... about 10% of the population, particularly white caucasian, are suffering from it. It has genetic origins ..... and there are four levels of RLS ... depends on your genes and on the environmental effect on them. (Epigenetics)
I am educating my local GP's and two neurologists currently.
I will talk to the team who audit this Forum ... perhaps we should publish our own 'INFORM YOUR MEDICAL PROFESSIONAL' Kit/ I am in the middle of creating my own for my area.
Hils
Hages I'm in a very similar situation to you. Augmented on Pramipexole after 20 years and I'm getting no relief from 300mg Pregabalin which I'm currently on. I'm in Northern Ireland and have an appointment with an Neurologist in 2 weeks time.
This is a private consultation and even then I only got it so quickly because I had a consultation with him early this year and had been emailing him about the lack of success with the Pregabalin, so he asked me to make an appointment with him to discuss the way forward from here.
Good luck fingers crossed 🤞 he finds another way to help
I'm in the UK & also have refractory RLS. Due to fact that not even many Neurologists keep up to date with RLS treatment, I suggest you take along anything from John's Hopkins/Mayo clinic guidance on RLS treatment in ppl who've reached the stage we have.Opiate based medication is now the gold standard treatment for refractory RLS. Some UK Neurologists also use Clonazepam (a Benzodiazapine usually used for Epilepsy) in a small dose to treat.
The trick is to go in armed with succinct prescribing regimes from world experts in RLS. They respect anything from Mayo clinic/John Hopkins Uni hospital experts especially.
There's a flow chart available & research you can print out from the files on this site.
You should also have a fasting Iron panel test done, going by what the experts say your Neuro should go by.
Explain you're part of this international forum too.
Good luck but don't come away empty handed, be assertive abt how this condition is ruining your life & there's relief available that must be prescribed to you.
This made a HUGE difference to the response I got. Try taking Jools' article from the Lancet link and the online Audio link there is about RLS. There's loads on here if you know where to look. Put Ferritin in to the search and Jools ........
I can't really help you as I take only 175mg of Pregabalin daily which is now not working and I know my GP would not increase the dose as he is a RLS non believer so he hints rather at me ceasing the medication without any suggestion of what he could prescribe as an alternative medication. I will continue with taking Hemp Oil three times a day and take two or three puffs of cannabis at night when symptoms are bad. That is my way of trying to control this dreadful disease, also I am going to try and cease the Pregabalin slowly. Good luck with the Neurologist, I hope you have found one that can and will help you.
I have had rls for years. My neurologist, after a variety of tests, found nothing physically wrong with me. He told me my rls was hereditary. I am currently on 300mg of pregabalin and am having some success. It just takes quite a bit of time for the drug to become fully effective. I have been on it for 4 months now and am finally getting some decent sleep - about 6 hours a night but sometimes 7-8 if I am lucky. It is not like ropinirole. When I was on ropinirole, before augmentation, I got 8 hours of sleep on a regular basis. As concerns the neurologist, as you know, everyone is different. I hope you find success.
Did he measure serum Ferritin in your blood??? Most of them ignore this. There is masses of information here about that. Educate your neurologist. It's up to us to do so.
Yes, ferritin level was normal. Wish there was an obvious answer to rls but at least the pregabalin is giving me some sleep. Last night I slept for about 7 hours though I had to get up in the middle of the night for about 30 minutes. I just felt restless.
7 hours seems sweet to me!! but Gabapentin does get me through. 8 weeks ago I had a ferritin infusion and my ferritin went up from 7 to 158. I felt amazing! with no RLS symptoms for about 4 weeks and then the RLS returned. Blood test showed that it had dropped back to 86. I have to have a second infusion next week.
Good luck dklohrey! With luck we'll find what works for each one of us in the end.
Doctors ignorant about the significance of iron for RLS. often make the mistake of thinking a "normal" serum ferritin level is OK.
I fact it isn't.
Presuming all your other iron tests are normal then it means you have no blood iron deficiency. It also means that it is safe to take iron therapy.
in that case you need to know the ferritin level tesult - the number.
The recommendation then is if ferritin is less than 75, you start an oral iron supplement.
"Normal" ferritin is anything above 12
Hages .... Please read other very informed POSITIVE information on this forum. Negativity has no place when we come to meet the medical profession. We need to go armed with correct easy to understand information and inform them ... ensure they LISTEN to you. Do not let them rush you ... refer them to RLSuk with > 12,000 members and also the American version RLSorg. In my experience if you go armed and positive they do listen.
Hils
Appointment with neurologist 
Neurologist appointment 
Neurologist for RLS- frustrated 
Neurologist appointment tomorrow
