Aussie looking for good specialists in Australia

[Muscovy]

Hi All,
This is my first post but I have been lurking in the background for a couple of months.
It’s a bit of a long shot... but I’m trying to locate a good specialist in Australia who may be able to help me with my medication.
I’m an early 40’s male with severe RLS. I was diagnosed a decade ago but battled for 15 years before that with symptoms that I could not explain to anyone, only to end up in the “depression/anxiety” category and managed poorly with medication which had no effect. My wife stumbled across an article one day about RLS which ticked all of the boxes and I was promptly diagnosed formally with a score of 26. 5 years followed on Sifrol (I think it’s pramipexol for you guys) combined with all sorts of combinations of other drugs to try to reduce my symptoms led to pretty bad augmentation (we didn’t know what we were doing, the doctors and specialists were flying blind). I eventually found a neurologist who flipped out when I saw how my augmentation and promptly transitioned me to Lyrica (pregabulin) which nearly killed me. 6 weeks of agony transitioning to Lyrica and neither medication was working. I’m currently 5 years into Lyrica and the side effects are taking their toll. Pretty heavy cognitive impact, particularly my memory. I’ve had to reduce to part time this year to manage my health but it’s really not ideal and certainly not a long term solution.
I’ve spent most of the year improving my lifestyle, I’ve always maintained a great level of fitness surfing, swimming, cycling and running but with a bit of time I’ve managed to up that more. I’ve not consumed caffeine for 3 years, reduced my alcohol intake and trying to improve my sleep hygiene ( that bit is not really working) and I’ve managed to reduce my Lyrica by close to half... although now the symptoms are far closer to the surface.
I have been trying to locate a specialist in Australia to help me manage my refractatory RLS. I’ve located,who I think is, the best guy in Melbourne but he is not really interested in addressing the medication side of my request, focusing more on other potential sleep related causes. I do appreciate his intent but really need someone who is familiar with and on board with the work being done by John Hopkins. We just don’t have this expertise or empathy in Australia yet.
So, if there are any Australian specialists on this forum or others who may have a good recommendation for a specialist in Australia I’d be great full in abundance.
Apologies for the essay, I’ll keep it short now that I’ve introduced myself.
Thanks
Muscovy (in Australia)
I have a great GP who openly confesses to not knowing enough about RLS.

[ViewsAskew]

Hi Moscovy. Welcome.

We had a member a long time ago who saw someone in Australia, but I seem to recall she had to travel quite a ways. Her name was Nadia - I haven't heard from her in years. Over the years, I remember a few others, but no idea if any of them still lurk. Often people stop posting when they have success and those of us left are either the diehards or those who haven't had success.

I know many of us over the world have been able to educate our docs...but you have to find one who finds it interesting AND is willing to be educated. Can be hard to find. I was sort of able to, but eventually moved 2000 miles to be close to a doc who gets it. Not something we can all do! And, moving to a new continent is definitely not something we can all do!

[Rustsmith]

Moscovy, to add to what Ann has said and because you say that you have a great GP. You might look at purchasing a copy of the book "Clinical Management of Restless Legs Syndrome", 2nd ed. by Lee, Buchfuhrer, Allen and Hening. You can find it on Amazon for about $US35. Although written for doctors, it is at a level where you can understand most of what is said. Many read through it, mark sections and then share the relevant parts with their doctor. Since you have refractory RLS, you might also take a look at the paper "Appropriate use of Opioids in the Treatment of Refractory Restless Legs Syndrome", which was written by most of the US based RLS experts and was published by the Mayo Clinic. You can google the title and print out a free copy and then highlight sections for your doctor.

[Muscovy]

Thank you for your responses. I’ve approached my GP and specialist with some printed material. My GP is on board with trialling anything to help relieve my symptoms but has asked me to get it cleared by a specialist.
My specialist however? Did not want to read the Publications that I provided and in fact indicated that he knew all about them but felt that he knew better as a practitioner. My reason for seeing him was to trial low dose opioids as I’m at a point where nothing else is working (without detrimental side effects) but he is not entertaining this idea yet. My last experience with a specialist 5 years ago really put me off and it seems history is repeating itself.
I know it’s a long shot posting in this discussion but I’ve been searching within Australia for years.

[Yankiwi]

Good luck. There aren't any in New Zealand but GPs listen and have a lot of leeway on prescribing.

[Polar Bear]

I am in N. Ireland and there is no RLS Specialist. I worked with my GP using the book mentioned above. I also printed out the pamphlet mentioned. Fortunately my GP was willing to learn. He told me he knew nothing about RLS. One an occasion when I emailed Dr Buchfurer I took Dr Bs reply to him and he was willing to take this on board.

It might be an idea to write to Dr B telling of your situation and asking for advice. Dr B may even know if someone in Australia.

I can't locate his email address at present, I'm not at home. Will add it later in case you wish to use it.

[Vichic]

Hi Muscovy, I’ve had some success with Prof Brendan Yee at the Woolcock Institute Sydney. They may have other locations, don’t know. Good luck, it took me ages to find someone good.

[ViewsAskew]

Hi Muscovy, I’ve had some success with Prof Brendan Yee at the Woolcock Institute Sydney. They may have other locations, don’t know. Good luck, it took me ages to find someone good.

Thank you for offering that! And welcome .