Totally shocked after Doctors appointment today.

[BishyBee]

Hi Everyone,

I went to see my GP today to discuss that the medication I have been taking since 2004 for my diabetes/ high cholesterol/ high blood pressure could be causing my RLS.

His reply was that I would probably still have RLS even if I wasn’t on any drugs, but this isn’t the case as my symptoms started after I became diabetic and was put on medication, I also explained that I had been taking Ropinirole since 2012 and I believed it was causing me to have Impulsive spending, he replied saying that he had never heard of Ropinirole being prescribed for RLS only Parkinson’s disease.

I explained I wanted to come off Ropinirole because of the ICD and that the N.I.C.E. Guidelines recommended that Gabapentin should be the first line of treatment and not Ropinirole, he said oh yeah it sounds like you shouldn’t take them then.

He has stopped my Ropinirole and told me to start taking the Gabapentin twice a day, I asked should I not wean myself off the Ropinirole slowly and he replied saying oh there is no need for that but if you want you could reduce it over the next week if you want. I was utterly shocked by his statement and knew I was fighting a losing battle with him as he didn’t want to know anything or educate himself, to top it all he then prescribed me 200 Gabapentin tablets instead of just 56 and it wasn’t until the pharmacy messaged him that he realised he had got the prescription wrong.

I feel totally overwhelmed and very upset as I only have enough Ropinirole left for 5 days. I can’t go back and see another doctor as it will take another month to see someone, I’m really worried that coming off of Ropinirole so quickly will be dangerous. Any advice gratefully appreciated.

Thank you. x

[SueJohnson]

That is terrible. Perhaps you could see if your pharmacy agrees with weaning off the ropinirole and could call your doctor and explain that.

I'm sure Joolsg will have some suggestions for you as she will be as outraged as I am and she is in the UK whereas I am not.

Also if you are forced off them you can take the cocodamol 8 times a day.

[Joolsg]

Aaghh!!! When will these morons stop behaving so negligently???Send an immediate complaint to the Practice manager and the RCGPs and your MP.

And consider legal action for medical negligence.

Switalskis will act on a no win/no fee basis.

[e-mail]

In the meantime demand an urgent appointment. Say you are suicidal!

Print off the withdrawal schedule from RLS-UK and tell the GP he needs to follow it!

Gabapentin should be started 4 weeks before the last 0.25mg of Ropinirole. And you don't take it twice a day. You take it in split 600mg doses 2 hours apart at NIGHT only.

[Joolsg in reply to Joolsg]

Here is the RLS-UK website. It sets out how to reduce Ropinirole safely and what to expect.rls-uk.org/useful-resources

[Danni54]

I am SO sorry that you are going through this. Unfortunately the medical profession don't seem to realise how bad RLS is or how some of the medication's can affect us. I don't know what is happening because it seems to be virtually impossible to get a face to face appointment with a Dr. and as you say, if you want to change you have to wait a long time. Jools is working so hard to try to make medic's understand more about this horrible, exhausting and painful condition but I am finding that they just don't seem to care. Please fight for proper treatment because it appears that we have to do that now and by fight I don't mean that we have to get aggressive but our voices need to be heard. Good luck with everything and please let us know how you get on. Take care and all the very best. x I just read what Jools and Sue have said. They are amazing so please do what they are saying. They have helped me so much .

[nick-the-turk]

Shocking to say the least but it is how little the medical profession know about RLS in the UK they need educating immediately I get more compassion from this site than I get from GP it is a constant fight with the medical profession we must keep fighting and bombard them with info from this site and just maybe they will get some education

[Jumpey]

You have great advice from Jools.Huge good luck.Could you afford a private one off appointment with a knowledgeable neurologist or sleep specialist? They could then write to your GP on your behalf. Also consider changing doctors.

[Hectorsmum2]

Dont see that doctor again. Find another in the practice who is at least be willing to listen and make a complaint. I am so cross.

[Chocolate123Lab]

Oh BishyBee, I am so sorry to hear this. Coming off Ropinirole like that will NOT be good for you. I agree with Jules that your best bet might be to report that you a suicidal and then perhaps come armed with the recent guidance on weaning off of Ropinirole. Also, a complaint to the practice manager most certainly seems in order. Don’t take no for an answer. You deserve proper care, especially as you start the journey of coming of the DA. Sending good thoughts