I am searching for a RLS Medical Practitioner in Perth WA

[KAYEx22parker]

I am needing a Practioner in Perth WA who has a good knowledge base of dealing with Restless Leg Syndrome/ sleep disorders. I have seen a Neurologist which didn't help & after 15 years with this disease it is now extremely debilitating and I have found no-one who is up on all the latest research (as I am). I am desperate to find a practioner who can help me get some quality of life back. Over the years I have done & tried everything. I had Augmentaion due to Dopamine drugs so now I'm going through the nightmare of withdrawing from Pramipexole, a Dopamine drug which I've been on for many years,

[Pippins2]

Kaye I will ask around for you and get back to you if I have any success ,Pippins2 x

[Goingthruhell]

Dr brand at st john of god midland...hes my specialist... he actually specialises in the stomach...gastroenteromitist...but i was recommended to him by my gp and he has gone above and beyond to help me...i too hv a very extreme debilitating case and he has experience with extreme cases...good luck...

[Goingthruhell in reply to Goingthruhell]

I thought i was the only perthy here...lol

[Ludo1010]

Hi Kaye, I am in Perth also. I have my first appointment with a neurologist in February who claims to specialise in restless legs. I hope so.

The neurologists name is Dr Susan Ho. I am going to be querying the neurologist about iron levels.

I am 58 and my RLS is now quite debilitating also if I don't take medication. I am now on pregabalin and find it 80% successful. It makes you quite tired in the day though. My local GP has been fantastic in listening to me and prescribing what I have asked for based on my own research.

I went through augmentation with pramipexole also. A nightmare to come off.

Regards

Jacqueline

[Trish8433 in reply to Ludo1010]

Hi Jacqueline. Interesting that you saw Dr Ho. I am also in Perth and recently saw her, in desperation. She was useless and I wonder if ever dealt with a patient with severe Restless legs. She tried to put me back on Pramipexole, even thought I told her I had augmented on this drug and have spent the last two years trying yo come off it. I won't be seeing her again. I think there is very little knowledge in Perth regarding rls

[Hidden in reply to Trish8433]

How many sleep specialists in Perth have you seen?

[Trish8433 in reply to Hidden]

Neurologist Julius Rodriguez - he wanted to do deep brain stimulation so I never went back.

Nigel McArdle sleep specialist - excellent and very understanding and supportive.

DR Ho, as I thought neurology may have found some alternative answers by now.

[Hidden in reply to Trish8433]

Why did you stop seeing Dr McArdle? Was he not able to help?

[Trish8433 in reply to Hidden]

No, I still see him. He has been away and I hit a crisis time of no sleep for two weeks!!! So I was trying desperately to get some immediate help. Nigel is also a sleep specialist as opposed to a neurologist, so I thought I would see if another field of medicine had any new ideas/suggestions. Nigel has me totally coming of pramipexole and on 40mg of targin per day.

[Hidden in reply to Trish8433]

Just DM'd you

[Trish8433 in reply to Hidden]

Nor too sure what DM means???

[Hidden in reply to Trish8433]

It means Direct Message. Look for the "chat" icon at the top or bottom of your screen, click on that and there should be a message there.

[Rogerbordley]

Hi everyone. I know this sounds silly but this is the first time I have ever head from anyone else in perth dealing with the same issues as myself. I have an extreme case that is currently being treated by 3 different drugs at the same time. I have seen 3 sleep specialists. The first 2 kept telling me I didn’t have restless leg as my symptoms were different to what they normally see. Finally I got put onto dr Richard Warren in west Leederville. He by all accounts is the last stop for the most extreme patients here in Perth. He is willing to use opioids where the other would now. I found them to be very effective in low doses until I had a surgery and was put on oxytocin while in recovery. Sadly I’m now back to not sleeping. I will be seeing him tomorrow but am running out of hope to ever have a normal life again.

the drugs I’m on.

0.75mg pramipexole

300mg pregablin

5/2.5 targin.

[amrob123 in reply to Rogerbordley]

Wow, that's a lot of medication to be on. You being an extreme case, i expect augmentation from pramipexole has been ruled out? That would be one possible explanation for you needing so much medication.

I have heard good things about Dr Warren.

[Rogerbordley in reply to amrob123]

I am fighting my way off of the sifrol atm. It’s been difficult. I have never been able to be treated with just one med. it’s always been a combination sadly. I’m hoping for better things in the futures. Fingers crossed.