Restless Legs Syndrome (RLS) Discussion Board

If anyone has recommendations for an RLS doctor in Central New York or within 250 miles, a day's drive, let me know I am looking! I did see two on the RLS.org site in Albany and can recommend them, let me know.
Thanks ~ Mel

Two of the best RLS docs in the nation are Dr WInkelman at Mass General in Boston and Dr Koo at Yale. Both of them are not only RLS experts, but also do research.

Hi Steve,
thanks for the suggestion!
I was able to make an appointment with a doctor Avinash Aggarwal at the Quality Care Canter University of Pittsburgh Medical Center, as that is the closest center to my location but it is still out of my state. I am concerned about how the medication would be prescribed and how my prescription would work. I will a couple of months to figure that out. I would hope as this is one of the 12 Quality Care centers that Dr. Aggarwal would at least read and or follow the research by Dr. Winkelman and Dr. Koo.
Thank you for your help ~ Mel

Macadwel wrote: ↑

Wed Mar 08, 2023 1:34 pm

Hi Steve,
thanks for the suggestion!
I was able to make an appointment with a doctor Avinash Aggarwal at the Quality Care Canter University of Pittsburgh Medical Center, as that is the closest center to my location but it is still out of my state. I am concerned about how the medication would be prescribed and how my prescription would work. I will a couple of months to figure that out. I would hope as this is one of the 12 Quality Care centers that Dr. Aggarwal would at least read and or follow the research by Dr. Winkelman and Dr. Koo.
Thank you for your help ~ Mel

Some of us get very creative about stuff like this. I actually made a friend's house in another state my residence so I could get insurance there and go to a Quality Care Center 2000 miles away. For a while, I was able to use out of state prescriptions, but that changed so I moved there permanently.

Was able to get an appointment with a recommended doctor on the RLS.org site, Dr. Durphy, who is a neurologist in movement disorders and specializes in RLS, and I was able to get in with her in May. I am hoping she follows the research of the other doctors on this site.

Macadwel wrote: ↑

Wed Mar 22, 2023 4:16 pm

Was able to get an appointment with a recommended doctor on the RLS.org site, Dr. Durphy, who is a neurologist in movement disorders and specializes in RLS, and I was able to get in with her in May. I am hoping she follows the research of the other doctors on this site.

What was the result, Macadwel?

I'm interested in your assessment of Dr Durphy in Albany. I live in Upstate NY and drove 3 hours to get to an appointment with her but then followed up with telehealth appointments with nurses after thatand I didn't end up having a good or helpful rapport with her. (Maybe because I was only able to see her once!) To me, anyway, she conveyed a weariness, like she'd heard it all before which wasn't encouraging to me.

Does anyone have any advice on how to find and form a good relationship with a doctor who specializes in RLS? I'm willing to travel - I have a family in Minnesota and have considered getting a referral to the Mayo Clinic but would love the name of someone there. I have tried various medications but never got up to a dose that worked with me on any of them (I don't like taking drugs so perhaps have not been the ideal patient in that way). I'd like to find a doctor who will listen, explain and if drugs are what I have to do, help me to get to a dose that will make a difference with my symptoms.

Does anyone have any advice on how to f ... in RLS? I

If you are a member of the Foundation, there is an article on how to find an RLS expert in the Spring 2019 edition of Nightwalkers. If you are not already a member (their membership drive is currently underway), it is not expensive and they offer "scholarships" for those who cannot afford to the cost of joining.

And, if that is too difficult, let me know and I can summarize the points in the article in a Private Message to you.

Thank you Steve. I'll look for that article in Nightwalkers Spring 2019.

Hi all,
Sorry, it has been so long since to gave an update on my progress with Dr Durphy. I had a great first meeting, and spent over an hour with her, talking about my past treatment and hopefully my future treatment. She was disappointed it took me so long to find her as there were not that many treatments left for me.

She put me on Horizant, which I tried and it did not work. So I am on oxycodone. Oxy is working out pretty well for me, I can get through the day and night. I did have to ask to be put on an extended form of Oxy for night time and she did not have a problem adding that to my medication. I have met with her several times over the last couple of months and she has been very respectful and receptive to my correspondence. When I was having a problem with sleep she set up a virtual meeting with me within a day and prescribed trazadone for me. I only take that as a need and try not to take it as when I do I feel really tired the next day and it is an odd tired.

I have sent a few questions to her through the portal and she has responded in a timely manner each time. She has been prompt with medication refills too. That has been something I had to adjust to, as with tramadol you can get that refill 5 days in advance, but with oxy you can only get it 2 days in advance which is a pain but I have adjusted.

Overall I am happy with her and her practice. I know there is not a lot left for me to take, I know there is only methadone and suboxone left unless they figure out how to get the DAs from augmenting, but I don't want to go on those medications yet.

Hope everyone has a great New Year!

sarahpatto wrote: ↑

Sun Oct 22, 2023 2:57 pm

I'm interested in your assessment of Dr Durphy in Albany. I live in Upstate NY and drove 3 hours to get to an appointment with her but then followed up with telehealth appointments with nurses after thatand I didn't end up having a good or helpful rapport with her. (Maybe because I was only able to see her once!) To me, anyway, she conveyed a weariness, like she'd heard it all before which wasn't encouraging to me.

Does anyone have any advice on how to find and form a good relationship with a doctor who specializes in RLS? I'm willing to travel - I have a family in Minnesota and have considered getting a referral to the Mayo Clinic but would love the name of someone there. I have tried various medications but never got up to a dose that worked with me on any of them (I don't like taking drugs so perhaps have not been the ideal patient in that way). I'd like to find a doctor who will listen, explain and if drugs are what I have to do, help me to get to a dose that will make a difference with my symptoms.

Hi Sarah, Were you able to find a new doctor? Are you still with Dr Durphy? If you are still with the practice there are a few others in that practice you could try to meet with or if you could meet with her you might see how nice she is. I am sorry you have had a bad experience with the nurses. If there is anything I can help with please let me know.

Melissa