Referral to neurologist

Hi folks,

Yesterday I had an appointment with my doctor to discuss my rls, as expected I mentioned augmentation and was met with a blank stare, its so frustrating, as I began explaining how awful this illness was and the many ways it affects me I couldnt help but feel like I was a hypochondriac, it was problem after problem but the reality is this illness debilitates me and its not all in my head, she eventually seen my desperation and has done an urgent referral to see a neurologist, will they b able to help, wot can I expect and wots the waiting time, anybody else able to give me some advice on this.

Thankyou,

Silleecharlea

14 Replies

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  • Not to burst any bubbles but in my experience the neurologists know very little more! I seen one recently and was surprised by how much more than them I know and compared to the likes of nightdancer et al on here I know very little!

    In saying that there are always exceptions, hope you get a good one.

    Best of luck.

  • Hi

    I have my appt tomorrow - I was referred by my doctor last March (7 months ago) after he refused to believe in augmentation and wanted to up my dose of Ropinirole again! Needless to say I refused and have managed to withdraw from the drug with the help of another doctor in the practice. (see my previous posts). I am now drug free and actually feel better than I did for a long time when I was on the Ropinirole - I didn't realise until I came off it how much it had affected me and how it made my condition much worse. I still have RLS every night but no longer in the afternoon and very rarely in the evenings.

    I am going with an open mind tomorrow and armed to the teeth with information about what I see as a way forward (in case they don't!).

    I'll let you know.

  • Yes pls do because im in the same position, my ropinerole has been increased twice from july and wen I try to explain my concerns they just say ' so do u want to stop them ', its not that simple bacause im not bein offered anything to help with withdrawal and I definitely couldnt go cold turkey, they wdnt increase morphine so easily so why is this their answer to rls, good luck for tomorrow, I hope u get some answers x

  • Just a thought - I was able to get down fairly low before needing support. I was on 2mg and was able to reduce it by 0.5mg every week. It took some doing but I was determined. It was only when I got down to 0.5mg that my doctor (at my suggestion) prescribed me Tramadol for the last bit - and I needed it. I stayed on Tramadol a bit too long though and had awful withdrawal symptoms coming off that. We can't win!

    Good luck

  • Iv just recently weaned myself off 25 tablets I took daily for 6yrs), im clean about 4mnths now but the thought of another battle with the ropinerlole withdrawal mite b too soon for me to deal with but its definitely an option wen I feel stronger.

  • I agree. You need to be in the right frame of mind first. So not until you feel ready.

  • It is annoying and frustrating to hear from many members on this forum that all too often doctors have no idea about augmentation, how to treat it when unfortunately it gets that far and only keep upping the dosage or say do you no longer wish to be prescribed this medication without a mention of being weaned off it carefully .

    The rls-uk.org has a section especially For Professionals. Even if doctors patients take them information explaining about augmentation they often refuse to take it on board.

    Whatever can we do to make them listen to us and become aware that what RLS patients are saying about augmentation is correct.

  • It is really upsetting that most GP's don't know about augmentation and how to help patients through withdrawal. I came off ropinirole with the help of people on this site who know so much more about RLS than any GP in my local practice or any of the 3 neurologists I have seen for my MS ( they prescribed amitiptyline to ease what was clearly augmentation and when it made the RLS 100% worse said " Oh that occasionally happens!)

    I really hope the neurologist you see is more knowledgeable but, just in case, take printed copies of all the useful info on this site and the US site about augmentation and how to come off dopamine agonists and what drugs to take while withdrawing and afterwards to control the RLS.

    I used tramadol during withdrawal but really needed something stronger like co codamol or oxycodone. I'm now on tramadol and gabapentin to try to find a dose that works to control the RLS. Hopefully the neurologist you see will help you to get off the ropinirole and find something that helps longer term.

    Best of luck,

    Jools

  • Jools, co-codamol, i would have thought not as strong as what Tramadol is which is a opiate altho a synthetic one. Co-codamol is codeine but has paracetamol in it. You would have tobe careful with how many of those you can take in 24 hrs because of the paracetamol. Oxycodone is stronger than Tramadol, so would be better for you IF your doctor will prescibe it. What about Targinact..? That is approved here for RLS.

  • Hi Elisse. What category of drug is Targinact? Is it an opiate?

  • Jumpy here is the info about Targinact so you can get a better idea on the med and how it works etc.

    medicines.org.uk/emc/medici...

  • Know the feeling silleecharle, my neurologist put me on Dopomine Agonists and they are something to steer clear of if possible. This website is excellent.

  • I saw the neurologist and was surprised how much he listened. Mainly it was him listening to me and not saying much! He acknowledged that I was certainly well informed and had done my homework! He did a sort of tiredness quiz on me and said that the results were poor (I don't think anyone with RLS would score well!) and he asked about the RLS, the insomnia and the anxiety.

    He then told me to continue the iron and scrap the magnesium, told me to follow good sleep practices (which I mainly do, but they could certainly do with tweaking) and to follow a healthy diet etc which I do.

    I have to go for blood tests for various vitamins which may require treatment and if so he will write to me and he is also going to arrange for me to attend a sleep centre and also have something attached to my leg (I didn't catch what - will have to wait for the letter). I then see him again in 4 months - he said I needed to be patient but they would be able to find something that would help the legs, the insomnia and the anxiety.

    I know I have come away with no treatment but at the moment I am feeling quite good about myself. I hadn't realised how low I had got and how bad I felt taking the ropinirole and suffering with augmentation. I'm now through the withdrawal and although my legs trouble me at night I still feel better than while I was taking the drug and it was working against me. Before I took ropinirole I rarely got RLS before bed time. By the time I was ready to stop taking the ropinirole I was suffering from it on and off all day. This soon reverted back to night time only once I was free of the drug. And my head is much clearer.

    It's nice to give my body a break from the medication but I'm not naive enough to think I will be able to manage this way for long but neither do I want to chop and change from one to another without listening to what my body is telling me. There is no quick fix as we have learnt.

    So I have no idea what to expect from a sleep centre or what this thing is that he wants to attach to my leg but at least he didn't just appear to fob me off. Time will tell whether anything good comes from it.

  • After suffering for quite some time, I was referred to a neurologist. He did not seem to know much about it but gave me Ropinorole (Requip) which I have been on ever since. It does not cure RLS and can only ease the symptoms if you are lucky. Some days (nights!) are worse than others and sometimes I would like to cut my legs off!! Some days the tablets seem to help - it is very hit and miss unfortunately.

    Good luck!

    P.S. Has anyone tried acupuncture?

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