Hi, I have been following all the posts about RLS for the last 6 months and I must say that HealthUnlocked is an amazing source of information and support and, clearly, some people are experts in this field. It is important to get the perspectives of patients.
I am writing on behalf of my 90 year old dad who lives in Denmark and, despite treatment, has suffered severely from RLS for decades. In Denmark this is no charity giving support to RLS sufferers and I am unable to find any doctors/neurologists who mentions RLS as an expertise and there is little knowledge and understanding in the GP community. We have therefore decided to seek "remote" help in the UK and my question to the forum is if anyone can suggest a good doctor in the UK. I would also be keen to hear from anyone who has experience of RLS treatments in Denmark.
Many thanks in advance.
Written by
henryuk
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There are a few neurologists in the UK who specialise in RLS but they do still seem to prescribe dopamine agonists which is not best practice.
However, if your father makes it clear he doesn’t want them to be prescribed for him, he could get the help he needs.
Prof. Chaudhuri at King’s college hospital in London specialises in RLS but he has a very long waiting list on the NHS. If your father sees him privately the wait may not be as long.
If you’ve been reading this site you will know that the first thing your father needs is a full panel blood test to establish serum iron & serum ferritin & then check he’s not on meds that worsen RLS like anti depressants and sedating ant histamines.
Thank you. That was a quick reply I will contact Prof. Chaudhuri at King’s college for a private appointment. In preparation for a private appointment my dad has just had blood taken including for serum iron/ferritin (ferritin was 134). Current medication is Pramipexole (0.18mg) and Gabapentin (300mg) and he has severe symptoms. He has taken varyious types of dopamine tablets for 15+ years so my guess is that he is experiencing augmentation. He has tried CBD for a couple of months now (6 x 10mg capsules=60mg in total) and it hasn't helped. My dad takes Spiriva and Seretide for COPD none of which should make RLS worse (I think). COPD is not a great combination with RLS, as he is less active.
Based on what I have read on HealthUnlocked, he should slowly get off Pramipexole and start something new and keep trying until a solution is found (e.g. iron infusion, bigger dosage of gabapentin, or an opioid etc). He is open to anything that works, including opioids. So the plan now is to get an opinion from Prof. Chaudhuri and then pass it to the GP in Denmark.
The pramipexole will be the problem, particularly if he’s been on various dopamine agonists over the last 15 years.If he has COPD I suspect opioids would not be suitable as they cause respiratory depression.
However the Gabapentin could be increased to 900mg & I suspect that is what a neurologist would recommend.
Your father’s serum ferritin is fine & once off pramipexole, that level may be enough to help reduce symptoms BUT 20% of people do not improve after raising serum ferritin.
Another option is to send an email to Dr. Buchfuhrer, an RLS expert in California. He responds quickly to emails ( and doesn’t charge) & gives excellent advice.
His email is
somno@verizon.net
He also runs a useful website where he lists ALL questions & replies at
Thank you again Joolsg. Wish I had posted earlier. I have contacted Prof. Chaudhuri and have been told we will get an appointment in early January. I keep seeing references to Dr. Buchfuhrer. He must be a kind man. I will have a look at the website he runs. Thanks.
He is wonderful. He is a Canadian ( that will explain his willingness to help without charge). I just wish we could clone him. Delighted you have an appointment with Prof. Chaudhuri so soon but be wary of any suggestion to stay on pramipexole or switch to the Neupro patch ( another dopamine agonist) as augmentation WILL happen again.
I would not suggest coming over to the UK in early Jan from overseas if age 90 due to Covid. We are pretty locked down over here & our numbers are rising fast. I would do everything remotely & stay at home.
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I will contact Prof. Chaudhuri at King’s college for a private appointment. In preparation for a private appointment my dad has just had blood taken including for serum iron/ferritin (ferritin was 134). Current medication is Pramipexole (0.18mg) and Gabapentin (300mg) and he has severe symptoms. He has taken varyious types of dopamine tablets for 15+ years so my guess is that he is experiencing augmentation. He has tried CBD for a couple of months now (6 x 10mg capsules=60mg in total) and it hasn't helped. My dad takes Spiriva and Seretide for COPD none of which should make RLS worse (I think). COPD is not a great combination with RLS, as he is less active. 
RLS
RLS
Coedine Prevents RLS Symptoms
ATTENTION MEN WITH RLS NOT ON MEDICATION FOR RLS.
RLS specialists in the Midlands/North West
