A little about me

[Smitty]

I am still finding my way around this discussion board and am thankful to be here. I live in Canada and was diagnosed with rls about 30 years ago and have tried many of the drugs available, i.e Gabapentin, Lyrica, Mirapex, Requip, and Sinemet. I am adopted and have absolutely no family history. I have been on several drug combinations, however, always augment after a while. During the evening is always the worst when wanting to sit and watch TV...I always have to stand. No more going out to the movies. I remember the days riding the subway home from work and I had to stand because sitting was a nightmare. I have now seen a neurologist for the second time and as I posted last night, I am now on Neupro 2mg. This drug was not available in Canada previously. The worst side effect I am experiencing is nausea. This is now day 5 - hope the stomach settles down soon. I am over the moon right now though as I am not experiencing any rls.

There is not nearly sufficient research going on in Canada for rls and my family physician knows little about it, although I am doing my best to educate him. When I tried a drug holiday that lasted only 4 days, I couldn't stand the sleep deprivation. I told the doctor, as a figure of speech, that it is so bad at times it can make you want to jump over the balcony. Well, he took me seriously and said he could have me sanctioned if I really felt that way. Oh boy, I stormed out of his office, in tears, and he came running after me. To make a long story short, he started taking me more seriously and sent me back to the neurologist. In Canada, you cannot just go to a specialist doctor on your own, you need to be referred by your family physician.

Have a wonderful day folks.

[Polar Bear]

Here in the UK we also have to be referred to a neurologist.
And like yourself my GP knew little about RLS. GP told me that he perhaps had a one hour lecture on the subject during his training and that I knew more than him. My treatment at present and for a long time has been a medication cocktail which includes Cocodamol. To see a neurologist without waiting for over a year at least using our NHS system meant I paid privately and saw consultant within a week. The consultant neurologist knew very little and upon examination decided that it was not MS or any sinister disease and that I should continue my treatment as agreed with my GP. I think my GP was happy to have the consultant say this and thus continues to prescribe me the Cocodamol.

It actually made things more simple when my GP said that he knew little of RLS. He was willing to look at the guidelines provided in publications I'd printed out from the RLS Foundation (some information is only available to members) and was also willing to go onto their web site for information. I gave him the web details and at a later date he phoned me at home to help him through the RLS Foundation web site thus saving him time searching. GP was on his pc and I was at home on my pc.... as I led him to relevant sections.

I also have this book, it is excellent, easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. If you decide to buy it make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
I was surprised at how willing my GP was to accept my researched information until he admitted that he reckoned I knew more than him.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

Research is lacking in RLS the world over, it's not a 'life threatening' condition. Although I'd argue with anyone as to the power severe RLS weilds over our mental wellbeing as well as the physical symptoms.

Yes, I've been in tears during a GP visit, I've said there were times when I'd literally do anything for relief. I told him that I could understand why people self harm i.e. to replace a pain (albeit probably emotional) with another pain.

I hope your nausea starts to clear soon.

[ViewsAskew]

It truly saddens me just how ignorant our medical community is about this disease. I long for the day I log in here and never see these types of stories anymore. And, that the community takes it seriously with research $$.