My visit to the Neurologist in the UK

[Louless9]

I was incorrectly referred to the epilepsy clinic but the consultant saw me anyway and took my history. She said she would also chat to the “movement specialist” for their in put.

She did a physical examination and noted my reflexes were “brisk”.

She said that the dopamine agonists had been effective over the last two years even if they have stopped being effective now. When I mentioned the Mayo clinic algorithm she totally ignored it. She suggested a trial of Gabapentin, with perhaps a short course of clonazepam to help me sleep as my average sleep is 4 hours.

She also arranged for blood tests to be taken there and then, results would be a couple of days.

She is going to book an MRI scan of neck and brain, in case something in my neck was irritating my spine and my brain because of memory problems.

She would book a sleep study but it could be at least a 12 month wait.

The letter came through to me a month later summarising my appointment.

A trial of Gabapentin has been suggested, increasing the dose over 4 months.

A MRI will be booked due to my very brisk reflexes and mild memory difficulties.

Blood tests were all normal except for slight low vitamin D level at 42nmol/L normal is 50-200nmol/L. Also noted was slightly low serum iron of 10.9umol/L but transferrin saturation and ferritin were normal. No values for these were given in the letter.

The advice from the “movement specialist” was to continue on the Ropinirole at present but suggested rotigotine patch as an alternative.

The sleep study has been abandoned as the sleep specialist’s opinion is “that most people with RLS do not require this. I felt very disappointed about this.

As yet I am waiting for my GP to consult with me over the change of medication as she wants to discuss the risks with me. The offer of ‘routine’ telephone appointments here are a 2 week wait.

To be honest, I’m incredibly disappointed by the lack of interest in the Mayo algorithm but pleased an MRI is going to be done to ensure there are no other problems. I’m still waiting for that appointment. I have a review with this same (wrong specialist) in August.

I didn’t think at the time to ask about the change over from one medication to the other. It wasn’t clear if the movement disorder specialist was wanting me to take the Ropinirole at the same time as the new Gabapentin. I’m very concerned how I am going to survive this transition period and work at the same time.

There was no mention of an addition medication to help with my sleep, which today as I write this still only 4 hours a night if I’m lucky. I’m feeling drained, tired and mentally emotional and unable to cope. My RLS is steadily getting worse and I’ve waited pretty much a year since the GP referred me in the first place to the neurologist.

Does anyone have any thoughts or ideas of questions I should ask the GP regarding my changeover of medication. Do you have any coping mechanisms I could try to get me through this?

currently I have pains in my fingers and wrists and worried about arthritis, does anyone have this and RLS together? I find any pain I have is magnetised when my RLS plays up so that doesn’t help me sleep either.

sorry for long post.

thank you

[Louless9]

I meant to say I’ve been on dopamine agonists for 10 years

[SueJohnson]

The clonazepam should help with your sleep but because it has a half life of 40 hours you will probably be tired the next day, and with your RLS you are still likely to be woken up during the night,

I already gave you advice on weaning off ropinirole slowly as you are suffering augmentation since you are on the maximum amount of ropinirole and how to start gabapentin. Do not switch to the rotigotine patch as that is harder to come off of and is just another dopamine agonist. You will probably need a low dose opioid like buprenorphine to help.

Ask for your what ferritin is. Your ferritin has been low in the past and you wanted an iron infusion. Did you get it? and did it help your RLS? If not have you been taking iron and did you feel that helped?

I may have given you this before: Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, 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, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Louless9 in reply to SueJohnson]

Thank you Sue, yes I remember your advice about reducing the Ropinirole. The GP is prescribing the Gabapentin and I’m to take the Ropinirole at the same time and withdraw that gradually.

I did not get iron infusion, GP kept saying it was normal range so did not entertain the idea. Gp is prescribing a short course of zopiclone to help sleep. I took Ferrous fumerate tabs as they were kinder to my tummy but still found them hard to digest and had no change in symptoms.

I could try reducing sugar and carbs But have read it doesn’t make a difference in some people. The rest don’t apply apart from HRT,

I tried supplements and magnesium salts soak. and CBD oil made me fell really gill

[SueJohnson in reply to Louless9]

On the ferrous fumerate if you had stomach problems or constipation, iron bisglycinate is better and can be bought OTC. Take them with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. However if you still have problems they can be taken with food although that will take longer to raise your ferritin but avoid dairy products. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[Joolsg]

I am so sorry you have received such poor treatment. As RLS isn't taught at ANY stage in UK medical training, it's normal.Suggesting a switch to Rotigitone is common amongst UK 'specialists', but as we know from members on here and the US experts, it quickly causes augmentation again and prolongs the agony! So refuse another dopamine agonist.

Your serum iron should be over 60. I'll bet your serum ferritin is below 75ųg/L as well. Ask for all the actual numbers. You can get a private iron infusion from The Iron Clinic in Harley Street for £800 or on the NHS, if you live near one of the few haematology departments that are aware of the link between RLS and low brain iron.

Do NOT continue Ropinirole.

Reduce by 0.25mg every 2 weeks. When you reach 0.5mg, start taking gabapentin. Start at 300mg and add 100mg every few days up to 900mg. Take it in split doses of 300mg 4 hours before bed, 600mg 2 hours before bed.

Sleeping tablets won't really help much during augmentation. And clonazepam can make you very drowsy during the day.

To help during withdrawal, you can ask your GP to prescribe a low dose opioid, like codeine, tramadol or oxycodone. Explain that dopamine agonist withdrawal is worse than heroin withdrawal according to the US experts.

Hopefully, you will get your GP on side.

[Louless9 in reply to Joolsg]

Wow! Re dopamine withdrawal. I did tell the GP that. It’s how do I function whilst trying to hold down a job that worries me. Thank you for your advice

[Dotmowatee]

I am in Plymouth and found my GP and local neurologist clueless, but I found a neurologist in Bath who was excellent. He advised my doctor to arrange an iron infusion and start on opiods which help tremendously. Still withdrawing from pramipexole, I changed my GP who has a lot of knowledge and my pharmacist is brilliant. These people do exist and even my local neurologist has apologised and admits that I know more than him. Unbelievable.

[Johan10 in reply to Dotmowatee]

Hi Dotmowantee. Any chance you could let me know the Bath neurologist's name please. I'm in South Devon and only know of Dr Jose Thomas in Cardiff. Thanks All the best to you.

Johan.

[Dotmowatee in reply to Johan10]

Dr Robin Fackrell at the Circle hospital in Bath. I had to pay but it was worth it. Best of luck.

[Johan10 in reply to Dotmowatee]

Thanks.

[Louless9 in reply to Dotmowatee]

Oh wow! Thank you for the information re neurologist in bath. If only they spoke to each other!

[Birdland]

Hello. So many of us have gone through this withdrawal. I understand your concerns about being functional at work while doing this. Just something to keep in mind, go as slowly as you need to. Just so you are headed in the right direction. It took me 3 years to get completely off 8 mg per night of Ropinirole. Although I took a year or so break from withdrawal when I got down to 1 1/2 mg.