what questions should I ask my neurologist?

[Louless9]

I am seeing a neurologist for the first time tomorrow morning.

Are there any important questions that I should ask?

I’m taking the maximum dose of Ropinirole so I shall ask for a change in medication, what can help with changing meds I.e. withdrawal symptoms.

I shall ask about Iron levels my last serum ferritin level in 2017 was 45.1microg/L

I tracked my sleep for the whole of last year and my average sleep per night is 4.5 hours, I’m really struggling with staying asleep and I am finding everyday life hard. My memory is awful, recollection of events, can’t find the right words, sleepy and getting ill frequently (tonsillitis).

Is there anything else?

thank you in advance

[SueJohnson]

Ask if he is familiar with the Mayo Clinic Updated Algorithm on RLS and if so you can be assured s/he will give you good advice.

Your ferritin is on the low side. I would ask for an iron infusion as that will more quickly bring up your ferritin and that will help your withdrawal from ropinirole.

This is my advice and hopefully he will agree with it. To come off ropinirole, reduce by .25 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

The first line treatment for RLS is gabapentin or pregabalin The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole 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 as the peak plasma level is 2 hours. 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 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)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin)

[Louless9 in reply to SueJohnson]

Thank you.

I fear they may not go for Pregabalin as I’m obese.

I’m really not looking forward to any withdrawal but if in the long run I can get relief of symptoms then it’ll be worth it.

Has anyone’s lives been severely impacted by RLS or the side effects of lack of sleep? I’m finding it hard to cope as it is let alone going through withdrawal symptoms. My work is affected and I’m really worried about it.

[SueJohnson in reply to Louless9]

Oh yes. There are even people who have committed suicide and others who have considered it.

But hard as the withdrawal will be, you can do it and we will be here to support you as you do it.

Yes some people gain weight on pregabalin or gabapentin But it is mainly because of an increase in appetite. And most only gain a few pounds. And others don't gain any nor feel an increase in appetite. I gained a couple of pounds. And if you find you are gaining weight it is easy to come off it unlike DAs and others have said that they lost the weight when they came off it. It is certainly worth a try. Otherwise the option is a low dose opioid and depending on where you live (what country do you live in?) it can be hard to get as many doctors don't like to or won't prescribe opioids.

[Louless9 in reply to SueJohnson]

I’m in the UK

[HeBgBgirl in reply to Louless9]

I have had RLS for 30 years and believe me when I tell you withdrawals from anything that exacerbates it is hell on earth!!! It’s been almost two months since I was abruptly stopped from the opiates I had been on for 20 plus years!! A extended release 2 x day and immediate release 4x day!! Was my last regimen I wish you luck and be strong. I don’t know how much longer I can take this!! Just doing a little chores is an absolute effort and I pay dearly for it!! Our kitchen has been under construction for last 6 months. It is almost done and I can’t do anything! I have to put it all back together when done!! Cleaning all cabinets etc! Waited 30 yrs to update it and now I can’t even function! Something that is supposed to be a good thing turned into a nightmare! RLS and pain together is a nightmare too!!! God be with you and pray and listen to music help too!

[HeBgBgirl in reply to HeBgBgirl]

By the way I gained 20 pounds since November!!!! That didn’t help at all!! Especially bc of osteoarthritis!! 190#s!!!!!! Omg 😳

[Joolsg]

1. Are they aware of the latest evidence based research, as contained in the Mayo Clinic Algorithm?

2. Will they arrange an iv iron infusion? Studies show the benefits. Iron infusions also help reduce augmentation and withdrawal symptoms.

journals.lww.com/ebp/citati...

3. Will they prescribe low dose opioids to help you through the brutal withdrawal?

4. Will they consider long half life opioids ( methadone or Buprenorphine) if pregabalin or gabapentin are ineffective?

Hopefully the neurologist you see will understand about the high rate of augmentation, the dangers of dopamine agonists and the benefits of iron infusions for RLS.

Good luck.

And be firm. Stand your ground.

Do not agree to another dopamine agonist like Pramipexole or Rotigitone.

The US experts, who see THOUSANDS of cases every year are all in agreement. Switching to another DA WILL quickly cause drug induced worsening again.

PS I've just seen your response to SueJohnson about obesity. In that case Buprenorphine is a better option than pregabalin.

Here is a study by Dr Berkowski, a top Expert on the benefits. Show it to the neuro. Using Buprenorphine can also avoid the horrendous withdrawal symptoms.

neurologyadvisor.com/report...

[Louless9 in reply to Joolsg]

Thank you. After coming off pramipexol I’m never taking it again.

I’ve been reading all the other posts and links too.

I’m so grateful for this forum

[Joolsg in reply to Louless9]

I've added a link about Buprenorphine. That will probably be a better option for you, but most UK neurologists are opioid averse.The MS team at Bart's prescribe methadone for severe, refractory RLS.

[Louless9 in reply to Joolsg]

Thank you, that is very helpful.

Out of the 3 GP’s I’ve seen, my current one knows nothing about RLS hence being referred. I pray this neurologist knows what they are doing.

[Joolsg in reply to Louless9]

It very much differs from hospital to hospital! Neurologists aren't taught anything about RLS during neurological training, unless the head of department has a particular interest in the subject. St George's and Bart's neurology departments are aware of the very high rates of Impulse control disorder and augmentation, so they no longer prescribe dopamine agonists.

King's College hospital RLS Clinic STILL prescribes Rotigitone, saying augmentation rates are low. That's not true!

There are pockets of knowledge throughout the UK, but most neurologists are still out of date and do not follow the Mayo Clinic Algorithm. They don't see the number of patients that US experts see. Here they may see perhaps 20 patients a year. In the USA, the top experts see thousands of RLS patients, so they can join the dots and realise that EVERY patient on DAs is suffering augmentation. They also see how hellish withdrawal is and that pregabalin/gabapentin do not work for a large number of patients.

[Louless9 in reply to Joolsg]

That doesn’t fill me with much hope. I’m going to an Oxford hospital.

Luckily I’ve had no problems with impulse control but augmentation and withdrawal, yes.

I’ll report back later to let you know how it went.

[Claire_1c in reply to Louless9]

Hi Louless9 , I'm new here and in a very similar situation to yours. I weaned myself off ropinirole last year (after 10 years' use) when augmentation made it impossible to continue. I've been seeing a wonderful sleep psychiatrist called Dr David O'Regan. Yes I've had to pay to see him, but it's been worth every penny. I literally couldn't keep still at night 6 months after taking my last dose of ropinirole, and was considering suicide.

I've tried everything to avoid opioids, but David (and the information I've read on this forum) have convinced me to give them a try. A month's supply of Targinact at the lowest dose costs about £45, and I'm hoping the NHS will take over prescribing after that. My first night's experience (two days ago) was really positive. I could actually lie still and not have to pace the house while my family slumbered. I was woken around 4am with RLS, but able to go back to sleep after 30 mins walking. Last night wasn't so successful in that I was awake for much of the time, but I can't overstate the relief of being able to lie down and relax. I'm being started on the lowest dose (5mg/0.25mg), possibly uptitrating in two weeks if necessary. It's all very scary and I never thought I'd find myself in such a situation. If only we'd know what hell dopamine agonists could lead to back when we started taking them! Having said that, who knows where opioids will lead. But when you're desperate you will try anything.

David's consultation fee is £300, which is a lot of money, but for that you get a good hour of his time, and he is so incredibly kind and compassionate. He's now written to my GP requesting they put me under the care of his NHS equivalent, who he says will have the same degree of knowledge and experience as he does.

I really hope you can get some help as I know what utter misery you are going through.

[HeBgBgirl in reply to Louless9]

Just an FYI most people in medical field especially doctors here in USA know nothing about RLS either!! My daughter is in her final year of physican assistant program and said it was mentioned in a sentence basically!!! That to me is a serious problem!! Especially since this disease has been around since the 17th century!!! My God why is it being so under studied!! Here or across the pond!!! Pharmaceutical companies do nothing to help with research bc they can’t cash in like they did with Covid!! Digress

[HeBgBgirl in reply to Joolsg]

Funny I actually had dinner with Dr Berkowski at the RLS symposium in October how ironic a month later I would be in hell!!

To bad he is out of state for me plus he doesn’t take a lot of insurance if any which here means you pay out of pocket!! I’ll give benefit of doubt that maybe just maybe he is a good soul and doesn’t ask for a lot of money!!! 🤔

[Joolsg in reply to HeBgBgirl]

I do hope you can see him and it doesn't cost too much. We have 'free' healthcare here, but it isn't much use when the doctors know nothing. To see a top neurologist, the waiting list is over a year. You can pay privately, and you'll br seen within a few months, but again, it depends on the specialist.It's a medical scandal, both sides of the Pond!

[HeBgBgirl in reply to Joolsg]

I often wonder about your healthcare there?? Is it free? Or does it somehow come out of your pocket somehow?? Nothing is free?? Money must come from somewhere? No?? I’d be interested in your answer. Thanks for your always prompt response to everyone on here!!

[Joolsg in reply to HeBgBgirl]

We pay higher income tax and National insurance than Americans, and that covers our health care. All operations, visits to primary care doctors, specialist doctors and ER are totally free, regardless of income.

We do pay a maximum of £120 a year for ALL medicines, no matter how many we use.

For example, I also have Multiple Sclerosis and see my neurologist twice a year, I have 2 MRIs a year, and see a urologist once a year. I have ultrasounds, scans and very, very expensive medication and I don't pay a penny.

However, our Health system was regarded as second best in the world in 2007. Since then, our current government has cut back spending and investment in our NHS and it is falling apart. Services are not what they were in 2007. That's why our doctors are currently on strike.

Watch this space...

[HeBgBgirl in reply to Joolsg]

hi jools! Sorry I have been going through hell since I posted last. It’s now September almost year since I asked about healthcare there!! Funny thing my husband was in England last month and had to go to clinic he said he paid nothing!! That is crazy new an American!!!

[DicCarlson]

Do bring a friend or family member to advocate for you. Good luck!