I went back to my GP today to ask for renewal of gabapentin & to ask about oxycodone versus Targinact armed with a print out of the NICE guidelines on RLS, treatments and Targinact.
Saw a different GP who's not up to speed on my withdrawal from Ropinirole & started to update her on situation. First she asked me " What's withdrawal?" -so I told her. Then she asked me where I was getting all my info, "hopefully from a neurologist". I told her that my neurologists are useless on RLS ( they are MS specialists) and that they had prescribed amitriptyline for me when I said my RLS was getting worse on Ropinirole. I explained to GP that amitriptyline made the RLS 1000% worse. She looked utterly unimpressed and said " I hope you're not using the internet to get your information." I replied that yes I was and that the information I had received was better than any I had from my MS neurologists and was contained in NICE guidelines anyway.
Why are GP's so unwilling to accept that they know nothing about RLS or how to treat it successfully and then feel they can condemn their patients for using the internet to look for desperately needed help? I feel like writing to the General Medical Council to ask for an explanation.
I'm pretty sure most people on this forum will have had similar experiences.
Rant over,
Jools
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Joolsg
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Hi Joolsg ,well yes that sounds about typical? I think the doctors fall into 3 camps (well 4 if you include the good ones who do their job properly.There are ones who have no genuine interest , those who are convinced that any info a patient has found out for themselves must be mumbo jumbo and those who have an inkling that you know more than they do and their ego cant take it!
I learnt quite early on not to say i got info off the internet but from.RLS-UK.I qualify this by saying this is not mumbo jumbo that i have found online but the official organisation that has some of the top Neurologist onboard and is reputable.Then i pause for a few seconds to let that sink in!
Anyway did you get the Targinact? How did the GP react when she realised that an opiate was now licensed for RLS?
Hope whichever med you got will help you
Pipps x
I havent had that experience from my doctor's but i am sure many on here have.
So, what did you come out with from your doctor....the meds you asked for .? Good idea on writing to the General Medical Council. i would love to hear what they had to say.
I came out with repeat of gabapentin as I wanted to wait a while to see if new combination of tramadol/gabapentin will work. I may well write to GMC just out of curiosity.
I asked my GP to refer me and he did although The neurologist just advised to increase the Ropinerole . I did for a week and I felt so ill I then returned to the dose I was on previously
I've had multiple sclerosis for 24 yrs so see an MS neurologist at least once a year. I recently asked for referral to see neurologist with expertise in RLS and GP wrote letter but as NHS is falling apart at seems, waiting time is over a year. I decided to pay for private appointment but even going that have waited 3 months for appointment and no sign of seeing neurologist until mid Oct at earliest.
They sometimes don't like that patients know more than them, also feel insecure as knowledge on subject isn't good, they can't be expected to know everything about all conditions. Just give her the RLS website address as there is a professional area on there. Hope you get on OK.
I had a similar response from my GPs. I went to two at my local practice, neither were aware of augmentation. All they want to give me was ropinerole, but adter my dreadful withdrawal from pramipexole I declined. I asked one of these GP's for Tramadol, and after much persuading he did give me them but said he didn't think they would do much good. Later when these stopped being quite so effective I asked for Targinact, and my GP almost shouted me out of his surgery. ABSOLUTELY NOT! NO WAY! Was his response. His attitude couldn't have been worse if I'd asked him for Heroin! At the time I was desperate. If I didn't have a loving family I would have probably topped myself at that point, I was so low. ALL the help I have received I have had from fellow sufferers here, or on Facebook.
It's awful that GPs can be so ill informed isn't it. Targinact is specifically approved by NICE for RLS so if you print out the NICE guidelines it will help you get targinact. I had same horrified response from my GP when I first asked for oxycodone but she did prescribe it next time I went. I haven't started it yet as I'm still trying to find the right combination of tramadol/gabapentin in the hope they might work. I don't think they're doing anything. I know what you mean about being so low ( and desperate). Keep the hope alive. One day we might find something that works.
Take care
Jools
The health service that we RLS suffers get is atrocious world round. If it were not for the internet and sites like this many of us would be in a very bad way or dead, and that is no exaggeration.
The Drs are the keepers of the knowledge and drugs and to the majority of them we are the great unworthy they have to keep well. I have gotten to hate,(and that is a very harsh word) drs over the years both through my work and through my illnesses/condition. The Ego's of 99% are huge and even when you come armed with correct knowledge they refuse you as it has not been them to come up with it and their egos can't handle the fact that many non medical people can access the 'sacred' knowledge and know more than them.
Neurologists know almost as little as GP's and to my own Dr's credit he pointed that out and advised against a private visit so I waited on the NHS, (God bless it) and lo and behold another lacking in knowledge.
Arm yourself as best you can on-line, bluff that you spoke to Dr's or nurses - read and learn about addiction, tolerance and withdrawal as these will be thrown at you when opiates are requested, (plenty of evidence to show that opiates used correctly to medicate physical and not emotional pain aren't as addictive as the Drs would have you believe).
As I have said elsewhere if you can get Kratom and cannabis you can very well medicate yourself safer and better than with prescription drugs.
Wise and true words Raffs.A medipen has just arrived in post. The first legal cannabis oil vaporiser. I'll try tonight and report results on here. Its bloody expensive but we all end up spending a fortune in hope of finding something that works. Onwards and upwards.
Yes. Doct3dont like to think you may know more or that you are using the rls website for your informative. My new doctor is, however, trying to listen and help but she says she doesn't know what to do next. Neurologist? Do they exist?
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Does anyone have any direct experience of Targinact?
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