Looking for RLS-literate health care provider

[theunnamed]

I live in Toronto and have had RLS for many years. My family doctor prescribed Mirapex - and the story from there is a classic. Initial relief for a number of years, then worsening symptoms, increase the dosage of Mirapex and take at times other than bedtime, even more worsening symptoms. My family doctor knows nothing about augmentation. I am managing symptoms on my own - reduced Mirapex, added iron supplement, am taking Gabapentin for a herniated disc. Symptoms are erratic - one day or week that is great followed by ones that are a struggle.

I need to find a health care provider in or near Toronto and would appreciate any recommendations.

[Polar Bear]

You know your family doctor and he knows you . He has tried to help you albeit following what is now outdated treatment. And if he is not familiar with treating augmentation then he is working blind. You probably know more than he does.
You can try to find a local doctor with rls experience by ringing around, asking if they are experienced in treating rls. It takes a long time to do this. Often doctors who say they treat rls are not well experienced.... if they offer mirapex or ropinerole as a first line treatment then they are out of date. You sound like you are doing the right things in your self management, reducing your Mirapex, adding iron and fortunate to be prescribed Gabapentn for your herniated disc. But of course, you want a doctor who will support you in your management and be knowledgeable. It can be a challenge.
I live in the UK but no doubt you will soon hear from some North American members.
Alternatively you could try to educate your current GP. Do you think he would be amenable to accepting documents available from the RLS Foundation web site. Would he follow the recommendations provided with regard to the treatment of augmentation. Would he be willing to prescribe an opioid if required. Is he willing to learn.
It is important that you know your Ferritin Serum blood levels. Ask for this test to be done as it is not done automatically in a regular blood series.
Levels need to be up around 100.
There is a book available on Amazon which is wonderful to take with you to your Dr. It's available on Amazon for around $40 or thereabouts.... The Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. It must be the Second Edition and I would recommend it. The authors are very much involved in the RLS Foundation and are the leading experts. Do not underestimate these guys. This book is so worth having. It's sitting on my desk here as I type and it's full of post-its, pencil notations, and comments. I take it with me to my GP to show what I mean, to explain, and to ask him to consider this treatment.

I'm sorry I can't add any links, my computer has difficulties and somehow all of my documents have been corrupted.
Look in the Just Joined Forum, read the Augmentation Forum,
Keep asking questions, knowledge is power,

[Rustsmith]

If you think that your GP would be willing to learn, here are two recent publications that were prepared to educate doctors about the proper way to treat RLS patients, especially those who are (or have been) in augmentation:
https://www.mayoclinicproceedings.org/a ... X/fulltext
https://www.mayoclinicproceedings.org/a ... 0/fulltext

In addition to calling all of the doctors in your area, starting with neurologists that claim to be movement disorder specialists and sleep doctors that claim to treat RLS, here are a few other suggestions:
1. When you call a doctor's office, ask to speak with a nurse. Ask the nurse if the doctor has experience with treating augmented RLS patients and whether the doctor is willing to prescribe opioids for the treatment of chronic neurological conditions. The answers that you get should be very telling and can save you both a long wait for an appointment as well as the cost of the visit. But even then, you may be as surprised a I was at a recent visit when the supposed RLS expert for my city kept asking if I had tried other dopamine agonists (after I had explained that I was on opioids because of augmentation).
2. Try calling the neurology department at the nearest major teaching hospital. Not only are you more likely to get a professor instead of the doctor who graduated at the bottom of the class, but these doctors are more likely to be willing to prescribe opioids since they are employees of the medical school and not in private practice and therefore are usually not as concerned about legal liability issues.
3. Look for younger doctors rather than those with decades of experience. Younger doctors tend to be more up to date and not set in practices that are decades out of date (such as using dopamine agonist as first line meds).
4. Finally, consider changing to a young GP who might be more willing to learn from a patient and who will actually read the publications at the top of this message.

[theunnamed]

Thank you so much for your recommendations, many of which were new to me.