Consultant Neurologist in the South East

[Believer1234]

Hi,

Can anyone recommend a good neurologist based in the South East who is covered by Bupa? All the neurologists that come up on the Bupa site never mention RLS as an area of interest.

Thank you!

[Joolsg]

I would recommend seeing a neurologist who knows a lot about RLS and have a phone consultation. There are a few neurologists in London who know about RLS and will do private work.

Try Professor Matthew Walker at UCL Queen Square or Prof Ray Chaudhuri team at King's College.

However, do ask some questions before you see them such as:will they refer for iron infusions if your serum ferritin is below recommended levels;are they aware of the Mayo algorithm; are they willing to prescribe low dose opioids if appropriate?

Many neurologists in the UK are not knowledgeable or up to date on RLS.

[Believer1234 in reply to Joolsg]

Thank you. Unfortunately none of the consultants recognised by BUPA list RLS as an area of interest and the ones you mentioned aren't covered by BUPA. It's a good idea to e-mail them beforehand though with those questions!!

[Joolsg in reply to Believer1234]

If you see a neurologist who isn't knowledgeable about RLS, it will be a waste of money and you may end up with someone who follows outdated NHS and NICE guidelines which still recommend dopamine agonists as first line treatment despite the world's top experts now stating these drugs SHOULD NOT be first line.

Iron therapy and eliminating medicines that worsen RLS is the first step and if that doesn't resolve RLS, pregabalin or gabapentin are first line meds.

Read the Mayo Clinic Algorithm and ensure any neurologist you see is familiar with it.

It may be better to self fund the first appointment or argue your case with Bupa. There are so few neurologists who know the basics of RLS in the UK, it's very difficult to get help.

A Parkinson's specialist will at least know that dopamine agonists cause Impulse Control Disorder and severe worsening of RLS symptoms so you could try that route and just remember to research the Mayo algorithm before you attend the appointment.

mayoclinicproceedings.org/a...

[Believer1234 in reply to Joolsg]

Thank you

[ChrisColumbus]

Various people on here have referenced Prof Matthew Walker: he accepts NHS patients - although I understand that the waiting list is very long - and private patients with most major private medical insurance companies. "You will need to request a pre-authorisation code from your insurer to share with our administration team. If we cannot confirm your cover, or if we don't have an arrangement with your insurer, you will need to pay a deposit to cover the full estimated cost of your treatment in advance. If we receive authorisation or a letter of guarantee from your insurer after this, you will be refunded."

These are his NHS contact details:

uclh.nhs.uk/our-services/fi...

I can't get his personal website to work for me this afternoon:

professormatthewwalker.co.uk/

Hope this helps!

[Believer1234 in reply to ChrisColumbus]

Thank you Chris - unfortunately he's not covered by BUPA!!

[ChrisColumbus in reply to Believer1234]

Sorry. I believe some people have found self-funding worthwhile, but I've not seen how much they've had to pay... 😒 I've been lucky enough to get fast treatment on the NHS for a stroke, a hernia and prostate cancer in the last 18 months. Unfortunately it seems more difficult to find RLS expertise.

Good luck - but you'll get good advice here from such as Joolsg, Sue Johnson and others. (Better than you'll get from *most* UK GPs or Neurologists!)

[Believer1234 in reply to ChrisColumbus]

Thanks Chris. And I might do that. But as I was lucky enough to get BUPA to agree to fund a consultation with a neurologist, I thought I would try that route first! 🙂

[SueJohnson]

I can't recommend anyone since I am in the US, but I can give you some information. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

[SueJohnson]

In the meantime: Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga. If you take any medicines or OTC supplements, many of which make RLS worse, if you can list them here, I can tell you if that is the case and may be able to recommend a safe substitute.

[Believer1234]

Thanks Sue. Both yourself and Joolsg have already given me some very helpful information and based on this I've got my gabapentin prescription increased to 1800mg which is definitely helping and I seem to have better nights if I eat lighter and earlier at night. Also based on your advice, I'm now taking Iron tablets every other night despite my iron levels and ferritin saturation levels being in the 'normal' range. Joolsg also gave me some very helpful questions to pose to the consultants re their expertise in RLS and it' s surprising how many have come back (all but one so far!) saying that they can't help me. It definitely helped prevent me wasting my time. In all honesty, there's probably little more they can do to help me but I'm hoping they may be able to give me a referral for an iron transfusion!! 🙂

[Believer1234]

I mean infusion! 🤣

[Joolsg in reply to Believer1234]

If you want an infusion, try writing to Dr Elizabeth Rhodes at St George's hospital in Tooting. I sent a direct email with research papers attached and they gave me the infusion in 2018 on 'compassionate' grounds. Since then, they've given 2 or 3 other RLS patients an Injectafer infusion. You won't need to send the research as they are now awarw infusions help 60% of RLS patients.

Once they get your email, they'll probably agree and ask you to get your GP to write a referral. The infusion takes 30 minutes. Very fast and easy.

[Believer1234 in reply to Joolsg]

Thats great. Thanks Jools! It's quite surprising the lack of awareness out there. A response that I just got from a consultant neurologist :

Thank you for your email. Unfortunately I wouldn’t refer you for iron infusions if your serum ferritin is low. I don’t tend to prescribe opioids for RLS. There are better medications. I see many patients with restless legs but if you are after these specific treatments it might be better if you saw a different neurologist. There is also the Centre for Sleep Studies at Papworth Hospital where they have expertise in RLS. When I see patients, if their serum ferritin is low then we give oral iron therapy, and I tend to prescribe some of the dopamine agonists unless there is a contraindication.

[Joolsg in reply to Believer1234]

Utterly horrifying but not surprising. RLS isn't taught at medical school, during GP training or neurology training. It's so frustrating.

The recommendation about the sleep clinic is good but the fact he dismisses iron infusions and prescribed dopamine agonists as first line treatment shows his lack of knowledge about latest research and treatments. I'll bet the 'many' patients he sees are currently experiencing augmentation on the Ropinirole or Pramipexole he prescribed!

I hope you manage to get an iron infusion and the gabapentin continues to keep the RLS under control.

[Believer1234 in reply to Joolsg]

Thank you Jools. Yes it's really surprising that most of them are not even prepared to consider that there may be more up to date information and think that what they have always done is the best way forward. Actually I wanted to ask you a question. You gave me some advice re taking iron supplements based on what you had done. You've also just said that you had an iron infusion. I was wondering why you were doing both and if the iron infusion hadn't worked? Thank you!

[Joolsg in reply to Believer1234]

I took ferrous bisglycinate 50mg every other night for about a year in 2017 and raised serum ferritin from around 75 to 145 but I still had severe RLS. At the time I was on 24mg Oxycontin and 150mg of pregabalin so that should have controlled my RLS. It didn't. I was 36/40 on the RLS severity scale. Professor Chaudhuri said that there was nothing more he could do. He didn't believe in iron infusions.

However, I had read about the success of iron infusions and sent all the research papers to St George's in Tooting. Dr. Rhodes agreed to an infusion. I knew I had a 60% chance of success. Sadly, I was in the 20% that see no improvement at all. My serum ferritin raised to 785. After 2 months it dropped to 480 and after a year it was around 320. I have no idea what it is now.

I no longer take iron supplements as my RLS is completely controlled with 0.4mg Buprenorphine. I credit Shumbah for that. She posted that it had completely stopped her severe RLS.

[Believer1234]

Oh thanks for that! That’s really useful info. You’ve helped me loads xxxx