Hi everyone. I am a long-time RLS sufferer with quite severe symptoms - I have to take medication daily to manage symptoms, have had augmentation in the past, and am resistant to some common RLS medications. I have just moved to the UK from the US, and asked my US doctor if he had any recommendations for a neurologist to transfer to in the UK (he is very well connected in this field, all over the world). His response was that the understanding and treatment of RLS in the UK is "primitive", and that he is concerned about my complicated/severe case finding proper care here.
This is obviously concerning, and I'm hoping that he is wrong. I will be living in London - can anyone recommend a good doctor nearby, with experience managing difficult cases?
Thanks very much in advance!
Written by
ustouk1
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There is no harm in asking. If you do not ask it may well not be suggested to you. It will be interesting to know how you get on once you see a GP regarding your RLS. As your doctor in the US says, GPs here generally do not know much if anything about RLS. Some will be guided by their patients, whom they admit know more than them about the condition but they are willing to learn, whereas other GPs may well not take this attitude with their RLS patients. Quite a few neurologists know little or nothing about RLS too so it can be tricky finding the help we need. In the first instance I very much hope you find a helpful GP.
You can ask to be under any Consultants team you choose however this does not guarantee you seeing the Consultant him /her self unless you have a private Consultation. You have a better chance being in London than the rest of the UK Dr Chauduri has spoken on occasion at the RLS. UK annual conference. Good luck letus know how you go x
Hey there! I am curious who your doctor was in the US and where he/she is located, if you don't mind sharing that. I am in the US and cannot seem to find a good RLS doctor. It sounds like you had a good one, though. Maybe I am just living in the wrong state to get good RLS treatment...*sigh*
I just read your post and, whilst I am in the UK, I have had tremendous help from DrMark Buchfuhrer in the US. Look at RLS.org and this will give some info. He is, I think, in California but I am sure others will correct me if I am wrong. His info has been provided electronically. He is co author of a book about RLS treatment.
Hi I live in Texas. Dr. Ondo in Houston is a neurologist who is super knowlegeable about RLS and has researched and written medical articles. I was very impressed with him. He spent the better part of an hour with me trying to work out a regimen. Google him. He is very respected and very good. He and two other doctors in his office specialize in movement disorders. You won’t be sorry. I’m so glad I found him.
I attend Prof K Bhatia’s Movement Disorder Clinic at the Institute of Neurology at Queens Square in London and, if you can be referred there, they have a good understanding of refractory RLS and treatment.
Oh, you're serious?? I just thought it was rather uppity of her doctor to call an entire nation of doctors "primitive". I certainly meant no offense to you!!
I agree with your US doctor. The UK is decades behind the top US RLS doctors.
I have been under Prof Choudhuri at Kings College Hospital London and I am not impressed. The waiting time was 9 months and after all that time I saw his registrar.
By that time I’d read Dr Buchfuhrer’s medical text book 3 times and read every research paper available.
I had weaned myself off Ropinirole with the help of the wonderful people on this site.
I was stunned when the registrar suggested another dopamine agonist- I had augmented terribly already.
I had worked out my my own medication regime after several emails to Dr Buchfuhrer in California.
So, I wouldn’t recommend Kings but I have heard good things about Guy Leschziner at Guys Hospital.
Hi - I take ripinirole 1.50mg daily (last night an extra 0.25mg). I also take baclofen, codeine, clopidogril, nitrofurantoin for a ongoing bladder condition, plus paracetemol !!! I would love to come off any of them - especially ropinirole but what`s the alternative? Any help is appreciated.
Getting off Ropinirole is difficult but very possible. You reduce the dose by 0.25mg every 2 weeks. You’ll also need a strong painkiller like tramadol to help during withdrawal.
Presumably you take codeine for the RLS, or is it for another condition? Your body will be tolerant to codeine so it may not not help the withdrawal from Ropinirole.
Get your serum ferritin checked and raise levels above 100. That will also help during withdrawal.
Once off dopamine agonists you can try an alpha2delta ligand like Gabapentin or pregabalin but they won’t be effective until about 2/3 weeks after the last dose of Ropinirole.
I take a combination of OxyContin and pregabalin.
Read all the posts about Augmentation and withdrawal on here and the main RLS UK site as the more you know, the more in control you will be.
Hi - thanks for all your concern and information with regard to meds. I have fibromyalgia for which I take the codeine and also hoped it would back up the other meds for the rls. I did once have a L4 block injection which helped for leg and back pain and I think also the rls. Whilst appreciating the info and concerns on this site - I also now think I may be developing an anxiety with regard to withdrawal of the ropinieole. Is it genuinely and really necessary to come off the DA`s ? Will the alternative work as well for me? Will the Doctor prescribe something else. I have had gabapentin in the past - they too have bad side effects. Tramadol makes your brain fuzzy. Recently (last two weeks) have been through EEG, sensomatose nerve tests, then two MRI`s. One for brain and other spinal. What is my neurologist looking for. My eyesight is deteriorating also. I am really confused. Is my dosage of Ropinirole high?
If Ropinirole is still working for you and your RLS symptoms are under control and not getting worse, starting earlier and moving to other body parts, then there is no reason to stop taking it.
However you say you’re on 1.5mg and took an extra .25mg. If Ropinirole stops working you shouldn’t increase the dose as that can lead to Augmentation.
Read all the posts on this site about Augmentation and dopamine agonists and keep a close watch on your symptoms.
Thank you for your concern - I`ll try to keep down. It is just once in a while when this is happening, so, I`m happy to be in control atm. Happy new year.
My experience was as i started to increase ropinirole it eventually actually brought on my symptoms earlier and i then began to notice at 2mg, the symptoms did actually worsen it once i actually took the dose.....I guess i was textbook as lots has been written about the 2mg mark started to show lots of augmentation. I gradually got off the Ropinirole over period as instructed by doc, who wanted to start me on another DA drug....but i chose not too, as i knew that would eventually do the same thing. I STILL have RLS, without meds, and notice it more during the nighttime and sleep is still very limited...But, i'm not walking around, with losing my mind feelings, as i just couldn't get that darn energy/hamster wheel in arms and legs to slow down. I was "beside myself" while on the meds...Going to start Melatonin and Magnesium …..we'll see.
Be careful with the melatonin, for many it worsens RLS. And it does not help with sleep unless you have jetlag-like sleeping problems, i.e. a shifted sleep rhythm.
Have you had you iron levels checked? Especially ferritin? Needs to be at least above 100 for people with RLS.
Can I please ask what your symptoms are, and how are they so bad? I have not been diagnosed with RLS but on what I've read on the nhs site I have it, and have noticed it's getting worse, but I don't have any pain just the constant urge to move, and it feels like my bones are hot, I use cold creams and sprays and gel pads to help relive it. But just wonder what else to expect as it progresses. Thanks.
May I be so bold as to ask what medication you are currently prescribed?
I am surprised you are here without a letter from your Medical practioner confirming what you are currently taking , unless you have arrived with a few months supply to keep you going until you find a GP, and then possibly a specialist in the RLS field.
You’re correct, I have about 2-3 months of medication to tide me over; I’m currently on pramipexole and gabapentin. I am hoping that a GP might be willing to prescribe a top-up of my current meds to last longer, if it looks like I won’t be able to see a specialist before then. Not sure how it works here, though!
I am also on Gabapentin, and in the process of withdrawing from Ropinerole ( current dose 0.50 mg) so also taking targinact( an opioid).
Ropinerole was prescribed by my GP two years ago and it initially brought huge relief until augmentation became a problem, a term I was unfamiliar with until my appointment with Professor Ray Chaudhuri.( kings College Hospital) It was he who advised targinact to assist with the Ropinerole withdrawal.
All of the above would suggest that our RLS specialists are not as primitive as has been suggested!
Furthermore, I think I recall an American subscriber to the forum expressing her concern with the likelihood that opioids might be more difficult to obtain in the US in the future.
One further point is I find the smallest amount of alcohol exacerbates the problem. A bit sad as I used to enjoy the occasional glass of wine ,especially at the weekend !
I was on maximum dose 4.0mg, so I am now on the last leg, so to speak, of reducing. On two occasions, by over sight, I didn’t take the .50 mg and I was awake all night, in and out of bed and near despair. Needless to say I’m putting off taking that final leap.
I do know someone who has been on a low dose of Ropinerole for many years with no adverse effect.
Hi - my dosage is Ithink quite low - lmg and 2x0.25mg. For the last three years. I find if I split them up slightly say: take the 2 x 0.25`s an hour before the 1mg it gets in my system quicker. Also, I need to do this before dinner as the food seems to inhibit absorbtion somehow. WHY, do most people on here think it best to come off DA`s but are happy to take gabapentin which has some bad side-effects - i.e. eye problems, double vision etc. ?
I think we all react differently to the various drugs prescribed for RLS. Someone I know has been on Ropinerole for many years without any augmentation problems. Similarly, gabapentin while bringing me a degree of relief, causes no adverse side effects.
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