Expert in Scotland?

[RLSHell]

Hi

I'm new here - my RLS has recently gone from Severe to Very Severe and I am finding it difficult to get any treatment.

Does anyone know of doctors with expertise in RLS in Scotland?

Thanks

[SueJohnson]

I can't help you with doctors as I am in the US, although you can click on the RLS Help in Scotland on the right side of this post near the top. I can give you some general advice. You list pramipexole on your health interests on your profile, so my guess is that you are taking it and with your RLS getting worse you are augmenting. Assuming I am right, you need to come off it. pramipexole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. To come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. 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 1-2 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 divide the doses on pregabalin) Most of the side effects of gabapentin or 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 of pregabalin) daily." If you take magnesium take it at least 3 hours before 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 new doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[SueJohnson]

Meanwhile: 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, 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.

[SueJohnson]

Also, many medicines and OTC supplements make RLS worse. If you are taking any and list them here I can tell you if that is the case and perhaps provide a safe supplement.

[RLSHell in reply to SueJohnson]

Dear Sue, many many thanks for your comprehensive response - and apologies for the delayed reply. One excuse for this is that I'm suffer from brain fog/sleepiness from about 1.00pm to 5.00pm, so I am struggling to get through my work, and am getting behind on things. I asked a simple question, to avoid taking up space with a full account of where I am., but your response encourages me to do so. I think it's best set out chronologically

2012 I started suffering from Night Eating Disorder

2016/17 I retired early from work, and started having anxiety attacks and extreme day time sleepiness. After exploring a diagnosis of Attention Deficit Disorder, I was given Duloxetine for the anxiety and depression.

2018 Restless Legs started about a year later. I'd had this before, about 20 years ago, (I'm 65) but they stopped spontaneously. After trying a range of drugs, including Melatonin and Pregabalin, I was put on Pramipexole. These worked like magic for a while

2022 Augmentation started. My psychiatrist here knew nothing about this. I went to a specialist sleep clinic in Spain (at great expense), where I got an iron infusion, and a prescription for a low opioid dose. This was in late August, so its full effect may not be apparent until Feb 23. My uk doctor has agreed to the lowest possible dose of the opioid (Targinact), which gives some relief, but he is unwilling to increase it to the amount allowed by the Mayo clinic. So, at the moment I'm taking: Duloxetine 90mg and Targinact 5mg. I was diagnoses with bowel cancer and had a successful operation for this in January 2022. During this, they found prostate cancer, which had spread to my pelvic bones, so I'm taking large quantities of hormones, as well as drugs for high blood pressure. My current state is

Restless Legs: moderate to severe

Night Eating Syndrome -severe, possibly worsened by the hormones. I've put on 20 pounds in the past 2 months

Insomnia, separate from the RLS

Daytime sleepiness: severe.

Anxiety and Depression, - under control with Duloxetine, otherwise I would be suicidal.

I have tried every supplement (Selenium, Vitamin D, B, Chinese herbs, Magnesium, probiotics etc) and device (leg compressors, infrared heat) I could get hold of.

The Spanish sleep clinic recommended I see a neurologist here, as they might understand the condition. My GP referred me to the NHS neurologists locally, and they said they don't do RLS!. Hence my request for a private neurologist.

Thanks again for your kind advice. Best wishes

[Kaarina Administrator]

I keep a very short list of neurologists that members of this forum have recommended in the past but unfortunately none in Scotland.

EDIT on looking again, Dr Edward Newman, neurologist, at Queen Elizabeth Hospital and Glasgow Royal is listed, but I have no further information than that.

Prof Matthew Walker in London is excellent.

[Whymelord in reply to Kaarina]

hI Kaarina,would there be a neurologist in N.Ireland on your list please.

[Kaarina Administrator in reply to Whymelord]

The only one I have for Ireland is Merlin Park, Galway, Ireland, Prof Shaun OKeeffe, Gerontologist but he has an interest in RLS. That is all I know about him.

[Whymelord in reply to Kaarina]

Thankyou kaarina,soo many people suffering this horrible syndrome and soo little help from the medical professionals. I would be lost without the help and guidance which I get on this forum.

[RLSHell in reply to Kaarina]

Thanks Kaarina, I've looked up Prof Walker and I will contact him tomorrow

[Butterflysun1]

hi, I’m in Scotland too & understand your RLS hell.

I asked recently about RLS experts in the UK & a lovely lady on here recommended Prof Matthew Walker in London.

I have arranged to see him on November 21st. It’s private though & the consultation fee is £350.

He accepted a referral without having to go through my GP though I let my GP know.

I think his secretary said he would do remote consultations if wanted but i’ve chosen to see him personally.

Would you like his contact details? I’ve done it all through his secretary who explained fees etc.

[RLSHell in reply to Butterflysun1]

Yes please, I would appreciate having his secretary's contact details

[Butterflysun1 in reply to RLSHell]

I’ll send you a personal message with prof walkers secretary’s email as the normal site doesn’t seem keen on me sending email info though I found it by googling prof Matthew Walker private appointment.

I’m not very good at negotiating my way round old posts so I haven’t been able to find your reply to Sue about your other conditions. I might be able to let you know what I know about this if you wanted to list them again.

How ridiculous that you have had to go abroad to get relevant blood tests. Just awful as should be standard.

I am about to try to get up to date iron studies before my trip to London & have found it hard to obtain the full list required in the past.

Where in Scotland are you based?

Kind Regards

[Butterflysun1]

me again! Subsequent consultations are less expensive but obviously following as much of the helpful suggestions of Sue as you can might minimise the need. I’ve found it not very easy to get the GP’s ( due to their computer request systems blocking it ) to do the full range of iron bloods or a haematologist to even condsider IV iron ‘off licence ‘ as he put it without the advice of a RLS expert even though I printed off the Mayo guidelines for him. That is what spurred me on to look for a private expert ( NHS waiting lists huge these days )

Do you have any secondary condition which can be associated with severe RLS? I do.

[RLSHell in reply to Butterflysun1]

Hi, as you can see from my reply to Sue Johnson, I had to travel overseas to get the right blood test and infusion, and I have a range of associated conditions - I've never sure which is the root cause or if they are all the symptoms of one disorder.

[Sillyvester19]

is there anywhere in Essex England as well please

[Kaarina Administrator in reply to Sillyvester19]

The only one listed but may not be that close to you is Dr Simon Merritt, Sleep Specialist, Benenden Health Hospital, Kent. This is the first name on the list so he may have moved on to another hospital by now.

A more reliable contact would be Prof Matthew Walker based in London.