Restless Legs Syndrome (RLS) Discussion Board

Hi Ann and YESSSSS It is too s o FRUSTRATING FOR SURE !!!
Thank you for your understanding

Grrrrrrrr but what can I do ? I will NOT change anything with my meds for today
Will see how I feel next week

I did however; call Dr Pawluck's office in Alberta BC and I could see him IF I am able to secure a referral Now I Hope and Pray I get one.
Last time I asked for a referral out of province the doc stated "we have plenty of good doctors right here in BC"
It is all so frustrating...Thank you anyways Ann:)

Marie (oceanwalker)

oceanwalker wrote:Hi Ann and YESSSSS It is too s o FRUSTRATING FOR SURE !!!
Thank you for your understanding

Grrrrrrrr but what can I do ? I will NOT change anything with my meds for today
Will see how I feel next week

I did however; call Dr Pawluck's office in Alberta BC and I could see him IF I am able to secure a referral Now I Hope and Pray I get one.
Last time I asked for a referral out of province the doc stated "we have plenty of good doctors right here in BC"
It is all so frustrating...Thank you anyways Ann:)

Marie (oceanwalker)

That was literally when I moved. Crazy, I know, but there was only so much I could put up with!

By the way, my brother-in-law told me that we we said we were moving so I could be by a better doctor. He said we lived in one of the best cities in North America with one of the top rated hospitals and if I hadn't found a good doctor, I wasn't trying hard enough.

Or words to that effect.

It gets SO maddening!

My husband, 76 has suffered from RLS since a young man he has been taking mirapex for quite a few years. It now does not help him at all. He suffers during the day as well as at night and seems to also have insomnia.Our GP will refer him to a neurologist, a wait of 2years. We are trying to find a neurologist in Canada, Eastern Canada preferably,who has a at least an interest in RLS. If we find someone, our GP will refer him. Any help out there?

It sounds like your husband is finally experiencing augmentation from the Mirapex. Treating it is going to require a doctor who understands augmentation and there are no guarantees that the neurologist will be that person. Unfortunately, many doctors know very little about treating RLS beyond handing out Mirapex or Requip.

If your current doctor is willing to work with you and learn, you can purchase a copy of the book "Clinical Management of Restless Legs Syndrome", 2nd Ed by Lee, Buchfuhrer, Allen and Hening. It is available from Amazon for about $US35. The book is written at a level where you can understand most of it, so if you mark appropriate passages and then share it with the GP, you might be able to make some progress.

Mcintojr wrote:My husband, 76 has suffered from RLS since a young man he has been taking mirapex for quite a few years. It now does not help him at all. He suffers during the day as well as at night and seems to also have insomnia.Our GP will refer him to a neurologist, a wait of 2years. We are trying to find a neurologist in Canada, Eastern Canada preferably,who has a at least an interest in RLS. If we find someone, our GP will refer him. Any help out there?

Rustsmith is likely right on target. So sorry you are both going through this.

Dr. Jaques Montplaisir (think I am spelling it correctly) was in Montreal and has done quite a bit of RLS research. His office may know of someone else, also.

I know a few people from Canada who have come to the States for treatment. I used to live in Chicago and actually moved to Southern California just so I could be closer to a good RLS doc. It is horrible to not have anyone to go to.

Hello there...well I do certainly hope that this person finds a RLS doctor !
Such a shame that there is not more out here in Canada and as well in the US
Please keep us updated !

All the best !

Sincerely,
Oceanwalker (Marie)

Mcintojr wrote:My husband, 76 has suffered from RLS since a young man he has been taking mirapex for quite a few years. It now does not help him at all. He suffers during the day as well as at night and seems to also have insomnia.Our GP will refer him to a neurologist, a wait of 2years. We are trying to find a neurologist in Canada, Eastern Canada preferably,who has a at least an interest in RLS. If we find someone, our GP will refer him. Any help out there?

In Edmonton at University of Alberta hospital is Dr Lawrence Pawluk, a sleep specialist with experience treating WED/RLS. I saw him when I was augmented and he managed me well. He is conservative on iron infusions, that's why I'm not raving about him, but if you can't find anyone closer, you could see if you could get in with him, he could certainly get your husband off the Mirapex and onto something more appropriate, which will have a to be an opioid at least initially.

Jacques Montplaisir is in Montreal (a researcher at the Sacred Heart Hospital and a professor at the University of Montreal) but he has moved away from WEd/RLS research into other sleep-related research. The sleep lab he founded is still operating. There may be physicians there who can treat augmented severe WED/RLS, but I would call first and find out. Check this page for more info : http://www.ceams-carsm.ca/en/consultation

I wish I knew of others. There must be others, but you might have to call various sleep clinics that you find on the web and ask them if they have a doctor experienced in treating augmented RLS/WED. eg. Sunnybrook Hospitial in Toronto says it treats RLS. Note that a lot of them will say they do but actually have no clue how to treat severe or augmented cases.

Awe thanks so so much for all of this info Beth !!!!
Very much appreciate it !!!!

Again I cannot thank you enough

Will def look into it

Sincerely,
Marie (Ocean)

Awe thanks so so much for all of this info Beth !!!!
Very much appreciate it !!!!

You're close to Pawluk, Marie; it could be life-changing for you if you could get referred to him.