RLS

[debramary]

Off to see doctor this morning not my usual one as he is off, so see whether a different doc can give me something else instead of Ropinirol as these are just not working for me at all.

[Kaarina Administrator]

Good morning debramary,

I wish you well with your appointment. You will probably know more about RLS than the doctor.

Do let us know how you go on.

[debramary in reply to Kaarina]

Thank you Kaarina, yes I do as they haven't a clue at the surgery I go to, they just look in the medical book to see what medication is available.

[Kaarina Administrator in reply to debramary]

Knowledge is power, debramary. It may come in useful to mention the section on the RLS-UK site entitled For Professionals.

[debramary in reply to Kaarina]

Hi Kaarina, the doctor has put me on Pramipexole, so I will see how I get on with these.

[sjw_1978 in reply to debramary]

I found ropinerole ok to start with but had to keep upping the dose which eventually began making me sick. I asked to change to Pramipexole and have found it much better.

[debramary in reply to sjw_1978]

This is exactly what has happened to me.

[Mum27]

I am also on Ropinirole worked for a short time now my legs are driving me nuts again. I printed information from RLS UK web site and gave it to my doctor, so when i go back hopefully he will have a bit more insight of how to treat the condition. I am seeing a sleep specialist at the moment , only been once due to go back end of may. I would like to see a Neurologist that specializes in RLS and is in the east midlands can anyone help with that

[debramary in reply to Mum27]

Hi Carol, that's the same with me.

[Pennyfarthing in reply to Mum27]

Hi I saw Dr Nikfecker at the Leicester General Hospital after paying to see him initially at Nuffield Hospital (private). It was the best £200 I ever spent. I researched him and he specialises in movement disorders and knew all about RLS. He ordered tests for neuropathy, I couldn't have an MRI as I have a Neuro stimulator in my back(unrelated). He gave me a list of progressive treatment, medication, to follow with my G.P and then transferred me to his NHS List. I went onto pramepexole after ropinarole failed me before I saw him. Tests showed I do have neuropathy.

These are working brilliantly, I take .18mg x 3 daily and no problems since August '15

[John_naylor in reply to Mum27]

I was in Uttoxeter and my Doctor sent me to Mr Davies at North Staffs in Stoke. He was v good but for more recent appointments I would be passed on to others.

[Mum27]

Hi Pennyfarthing. Thank you so much for the information, i think i will give him a try, can,t stand much more of this

[Windwalker]

You must keep looking until you find a doc who understands what you are dealing with. They are a rare breed. My first mention to my GP brought a smile and he said he'd never heard of that being a problem. My neurologist is an acquaintance of his and he finally perceived that it is a real medical condition. I didn't need his treatment, but I did need his understanding of why I took several meds and was miserable without it.

[Cfall]

@cfall. I know the Relaxis Pad isn't in the UK yet, but get your doctors thinking about it. Look it up on the Internet and print off a few pages. Take them to the doctor and ask him to check it out. I am so happy. It's been four weeks and no sign of restless legs. Add to your knowledge of where the nerve impulses come from. Claudine in California

[Hidden in reply to Cfall]

When we DO get the relaxis here in the UK, It wont be on prescription from our doctors. We will have to buy it.

[Cfall in reply to Hidden]

@cfall. To answer your question, it hopefully will be late summer. However, as it is a medical device, they do require a prescription. That is why I would like to see the doctors educated. It was a neurologist that told me and I am very great full. Claudine

[Hidden in reply to Cfall]

The relaxis people are looking for a distributor to sell them in the UK. It will not be done through our doctors. Our health system works different from your. This device would have to be approved by NICE thats the body of people who decide what meds etc are allowed to be used by our National Health. The cost of the relaxis would not get a pass to go. It would cost out NHS way too much. If it DID become allowed through our NHS i would be the first in the queue.

[Cfall]

Cfall. Very interesting and a bit frustrating. I think the price will come down when they have steady sales. It dropped $100 just before I got mine. As soon as NICE figures out how much they would save in Neuro visits and Rx, they may change their mind. Thank you for explaining. Claudine

[Mum27]

Thank you John Naylor for information. Thats a shame to be passed around i think its best to see the same doctor every time