At my last post, I was going thru hell would RLS. I self referred myself back to my neurologist I had previously seen privately ( in UK with GPs who have little knowledge).
I was somewhat sceptical as I’m sure his specialty is more leaning towards conditions such as Parkinson’s, MND etc
I have been on Ropinerole for about 13 years and on his last recommendation about 4 years ago was put up to 4 mg per day. This is now obviously augmenting as sometimes an an attack can last for 24 hours.
I asked him if he was familiar with latest Mayo Clinic algorithm. His response was to ask me to explain how I interpreted it. He then tried to tell there was nothing new there.
I have an unusual factor in that I have a large tumour on my spinal cord and he feels my RLS , although severe may be secondary because of the tumour. We may never know
Anyway, long story short, he agreed I should be weaned off Ropinerole and gradually build up gabapentine over 2-3. Months.. The one thing he refused to prescribe was an opioid.
I’m seeing GP on Monday to discuss, fingers crossed. I don’t mind I’m nervous about coming off Ropinerole
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Scottie99
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To come off ropinirole, reduce by .25 mg every 2 weeks or so. Let it settle before you reduce again and if necessary reduce by a smaller amount. You will have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms near the end. But in the long run, you will be glad you did. On the gabapentin, beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. 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 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. Most of the side effects of gabapentin 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 daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. If your doctor won't prescribe a low dose opioid temporarily, print out the section of the Mayo Clinic article and bring it in to show him.
So sorry to hear how you were treated by the Neurologist, it really baffles me why even they have so little knowledge of RLS when it affects so many. Wouldn’t it be great if one could find a Neurologist that actually specialised in RLS and Parkinson’s and MND and other neurological diseases were secondary. I am not saying that they are less important (they most definitely are not) but surely just one that completely understood. I am in the UK, have a lovely Gp Surgery albeit little knowledge of RLS, I have asked to see aNeurologist and have been told I will probably have to wait 18 months for an appointment so have been looking into going privately. The costs vary from £900 to £360 for an hours consultation so I really want to get it right! Can I ask who you saw and where, seems he/she may be one to avoid!
Thank you, his name comes up often, he certainly isn’t the most expensive and is my front runner at the moment. Did you need to produce test results before seeing him? I have been asked by another to provide test results and a neurologist report, which is why I thought I was seeing them!
I am in Glasgow and saw a Mr O’Leary at Ross Hall Hospital. He charges £250 per consultation. I suspect he doesn’t know as much above RLS as he would have you believe ( but maybe I’m being cynical)
I was not asked to produce test results but I am having my iron levels checked 3 monthly so I emailed the most recent to him once I had booked my telephone consultation. I also summarised the list of meds I had been on in the previous year following Augmenting on Mirapexin. It helped with my initial consultation .
Absolutely! Especially when you are paying out of pocket! If you go without test results or providing as much information as possible (to include a list of all medications and supplements with dosages), it is very likely you will be required to go get tests after the initial appointment and then report for a second consultation so he/she can go over the results and choose a course of action.
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