Doctor search in U.S.

[Reba1]

I have been following this super informative website for nearly a year and am wondering if there is a sister site here in the U.S.? OR, something comparable that anyone is aware of. I am in real need of a doctor who specializes in RLS or at least has advanced knowledge of it. (I live in NW Indiana about an hour from Chicago) Most referral services suggest a sleep study specialist for sleep apnea which I have been tested for and don’t need it again. I need someone who is knowledgeable of medications that I could try. On Ropinerole now (1.5 - 2.0 per day). It keeps me sleeping for about 5-6 hr at night but my daytime symptoms are worsening and starting earlier in the day. Augmentation I’m quite certain. Thanks in advance!

[Hidden]

There many RLS support groups on Facebook, many have more people in the USA that post than on here, altho all those groups still have people post from all different countries. If you are a FB user you might get someone who can suggest a doctor near you that is knowledeable in RLS if no one on here knows of one. If you dont have a FB account, i will see if i can find out for you. But dont bank on me finding that out.

[Reba1 in reply to Hidden]

THANK YOU, Elisse. I do have a FB account and will certainly check into that. I will also be joining the USA RLS foundation so I can benefit from all the info they seem to have.

[LanaCSR in reply to Reba1]

please let me know what you find out! I live in South Carolina and am in same boat as you!!

[Lolly53 in reply to Reba1]

I live in Texas and am also wanting to find a professional who is knowledgeable about this awful condition. My doctor knows a little but he really wants to hand me off to a neurologist because my RLS is to the point that is past his expertise. But the neurologist that I saw was clueless. Kind of brushed me off since during the day I seem to be doing great. Anyway, I would love to have a doctor who can maybe help me!

[nightdancer in reply to Lolly53]

HI, Lolly53. Texas is big state, Can you give me the city you are closest to? I know a few doctors in Texas, and need to know how far you are willing to travel. We have found out over the years, just because someone is a neurologist, does not mean they know about RLS, even though they SHOULD! So annoying. At least your doctor is admitting that he needs to send you elsewhere. How long have you had it, and are you on any meds for it? Also, as I mentioned above to Reba1, many drugs can make RLS worse, things we may never think about that could make things 1000 times worse.

[Lolly53 in reply to nightdancer]

Hi Nightdancer. Love your name but don’t love the fact that RLS is the cause of your name! Anyway I live just a couple of hours from Houston, Austin and also Dallas. Kind of in the middle of all three cities. San Antonio is only 3 1/2 hours away. I would love to know of any doctors that you could point me toward. I am 65 and have had steadily worsening RLS since my mid-30’s. I am currently on Lyrica (I take both a 75 mg and a 150 mg per day). At night I take a 30 mg dose of Temazepam just to be able to get to sleep. But that wears off in a couple of hours. So in the middle of the night I either take a Tylenol 3 or some CBD oil to ease the symptoms. I was on Mirapex for several years until augmentation set in causing daytime symptoms. Getting weaned from that was hell on earth. So I’ve pretty much tried it all. I know my food triggers and I know that I can’t exercise too strenuously or I’ll pay for it. I’m sleep deprived. But I’m healthy. I don’t hold out too much hope but I haven’t given up hope either. Thanks for making yourself available! Blessings!

[nightdancer in reply to Lolly53]

Dopamine withdrawal is comparative to withdrawal from cocaine, when you are augmenting. I cannot take that class of meds, or ANY med listed for RLS on or off label. The only thing that helps me is my pain meds that I need for my back anyway, so that is how I make it thru. I am sure I know a couple of doctors in Texas, will go see, since you are right in the middle of the big 3 cities. Be back in a few. I have been down flat today.

[nightdancer in reply to Reba1]

The RLS Foundation in the US has a list of doctors, BUT, when you get to that page on their web site, the disclaimer at the bottom says it all. "Some of the doctors listed treat RLS, and some are listed because they want to learn more about treating RLS". So they are not an entire list of experts, just a little warning. I have a slight issue with them, because they are a non profit, but unless you pay for a membership, you cannot get to a lot of places on their web site. I do not like the fact that they want people to "pay for information". But, they CAN be helpful and have gotten a little better since the new staff took over in certain areas. To be completely transparent, I am not affiliated with them in any way. But, it cannot hurt to join. They also have a list of physical support groups. They only list 1 or 2 online support groups, none of which are mine for many reasons. I find Johns Hopkins much more helpful. Also, Dr, Mark Buchfuhrer at rlshelp.org is the researcher and active RLS doctor in the US is the first RLS doctor I ever met online. The treatment page is good, he has not had the new recommended doses for Requip and other dopamine meds updated yet. But, also, on the same treatment page, there is the list of Drugs to Avoid which will make RLS worse. Are you on any other meds for ANYTHING else? IT can make a huge difference.

[LotteM]

Have a look on the USA rls foundation website, rls.org. I think they have a list of rls-specialists. You may have to subscribe to get that specific information.

[Reba1 in reply to LotteM]

I am doing the paperwork now to join the USA rls foundation. Thanks for the suggestion.

[nightdancer in reply to Reba1]

See my comment above on the list of doctors on the US RLS Foundation web site. Some are not "vetted" so well.

[involuntarydancer]

The website Lotte mentions has a discussion board attached to it - you have to join the board separately - I am pretty sure there is a section somewhere on the board that lists doctors that people posting on the forum found helpful. You could join the board and maybe someone there could suggest a doctor. If you search 'bb rls forum' in google it will bring you there

[Reba1 in reply to involuntarydancer]

Thanks for helping me in my search for a good, competant physician, Involuntarydancer.

Discussion boards are so helpful!

[Hidden in reply to Reba1]

Nightdancer is really on top of rls info in the US. I would definitely follow up on the advice to send her a message. You can also read some of her posts. I think you'll learn a lot about how to be a better advocate for yourself and have a more successful search for the right doctor. Take care. xx irina

[LotteM]

Otherwise, try to find and pm nightdancer. S/he is in the US and manages many online rls-groups and has said before that s/he can usually help find a knowledgeable doctor. Nightdancer used to be very active, but I haven’t seen posts or replies for a while. Hopefully s/he will reply to rhis thread.

[Reba1 in reply to LotteM]

Great suggestion, Lotte. I'll see if I can "find" her! Thanks.

[Hidden in reply to LotteM]

Nightdancer doesnt come on here much lately due to her fighting the cause for opiates. So she gets busy. I am a co-admin in one of her FB groups so i am in touch with her every day. I did ask her about whether she knew of a doctor for that area, but she does forget when she gets tied up with other things.

[LotteM in reply to Hidden]

Thanks Elisse. I was considering to pm her, as sometimes it can be hard to find specific people on the forum. This is even better.

[nightdancer in reply to LotteM]

I am also preparing for knee surgery, torn meniscus, and after that it is going to be another back surgery. So not going to be a fun summer! AND, my mother is 90 now and lives with me, so things do get busy for me. BUT, I will try and help anyone who needs it. And, if you want to join Nightdancer's on FB, there will be 3 questions to answer, and let me know you are from this forum. That group is my baby, and it is invitation only. When groups get TOO big, it turns into a circus.

[Reba1 in reply to nightdancer]

Dear Nightdancer. I started a reply to you a couple days ago, got interrupted, and now can't find the beginnings of my reply. So sorry.

I cannot believe that with everything else you have going on, you have taken the time and effort to answer me and help me in so many ways. I've gone down the torn meniscus road and it will slow you down for a few days but after a couple weeks you should be up and around again. All I can respond to the up-coming back surgery and Mom living with you is .....lots of love and good luck. Focus ahead to the fall when, hopefully, you'll be pretty much recovered from your surgeries and it's all behind you! You appear to be a very tough "person"....I too am not sure if you're a "girl dancer" or a "boy dancer" in the night....and it doesn't matter a bit...just stay tough, positive and you'll get through this too!

I am going to devote a couple days hopefully starting tomorrow to reading more on all these blogs, websites, organizations, etc. that everyone has so graciously suggested. I am feeling a bit overwhelmed, however, and must sort it all out and maybe will have to take lots of notes and perhaps a flow-chart! My first item of business is finding out how to ween myself off of Lexapro. Just since reading all the dozens of responses I have learned that it is not one of the suggested anti-depressants of choice for us RLS'ers! Have been on it for well over a year and now want OFF OF IT if it is a possible culprit. (By the way, I am so relieved to hear that I'm not the only one to become so DOWN coping with this hideous disease...somedays it literally rules my life!) Then I'll start looking for members in or near my geographic area to chat with, and finally see if there are any good doctor possibilities around here. I'm definitely keeping your info about the Northshore Mayos. Had NEVER heard of them and have lived in this area for most of my life. With the Mayo name attached, they HAVE to know what they're doing. It will just be refreshing someday to walk into a doctor's office and have the professional help me and teach me instead of vice versa!

Thank you again for your generosity in sharing your time and your knowledge; it is VERY appreciated! Enjoy this beautiful weekend! (at least it finally is here in the midwest!)

[Hidden]

Hi Reba. I live in the US and was having a problem finding a doctor that could really help me. The one I was usingwasn't really interested and my PCP was unhelpful, I found an excellent neurologist and here is how I did it. I checked forum members who lived in my area (or at least a reasonable drive for me). I actually posted it as a question and a forum member who had found a doctor (a neurologist who has rls himself) who practices about 2-3 miles from my home-at Emory University contacted me by PM and gave me all the info I needed incl his positive experiences with this new doc. The forum member was thrilled to find him and so am I. You can also access the part of the forum that lists members who live near you. One thing I like about a worldwide forum is learning how my medical problems are treated in other countries. There is much good info from other countries that through PM we can access for those of us in the US. It gives us more options. Good luck finding a caring, competent doctor near your home. And I would start by posting a question that you would like to hear from members who have found good care in your area. Good luck with this and take care xx irina (Atlanta)

[Keitha]

Try this website: rls.org Located in Austin, tx. Lists providers, RLS foundation centers across the US, and other info. Good luck.

[Retren]

3 May 2018 there is a very informative magazine called Nightwalker which is put out by persons afflicted with RLS. it contains articles written by physicians who specialize in the condition and gives a great deal of advice regarding medications the latest advances in research etc. It costs 30 dollars when I last was billed. and it is something my neurologist reads .I live on Long Island so am not much help otherwise. Dr Buchfeurher in California is very helpful When contacted by email.no abbreviations with his messages.

[nightdancer]

HI, Reba1 IF I were you, since you are only an hour from Chicago, I would be calling the Northshore Mayo Clinic 1-888-200-4530 I do not know the doctors there, but have checked things out, and that is where I would go. And, get connected with the Neurology Dept. The Mayo Clinic, no matter which locations they are, are always good and always doing research. I wish I had a name I could give you. I can tell you have been researching, since you mentioned augmentation, which I love!! Knowledge is power. Like Elisse said, there are lots of FB groups. My BEST one is simply called Nightdancer's. I purposely keep it small, under 500 people. I have other groups, but Nightdancer's is my SMART group, and is invitation only. IF you are on FB, that group is the most helpful and the most knowledgeable bunch of people, and some of them have been with me for over 20 years on and off FB. Before FB days, I had the very first RLS support group that I started when I got my first computer, and I have several RLS doctors and researchers as mentors. Actually, it has been since 1996 that I have been doing this, had to self diagnose and then teach my family doctor about RLS. A neurologist is a good place to start. Can I ask what kind of doctor you are seeing now? Since you have already had a sleep study, I am going to assume that they did not say you are kicking while sleeping, which is involuntary and called PLMD. Periodic Leg Movement Disorder. RLS is when you are awake only, and that urge to move that you just cannot ignore. 2 mgs of Requip is as high as you want to ever go, because of augmentation. When and if you do call the Mayo Clinic, and get to Neurology dept, ask which doctor treats RLS the most. It really depends on the doctor and how much they want to know about RLS. My GP takes care of all my stuff and prescribes all my meds. She is an angel. Hope this is helpful for you.

[Reba1 in reply to nightdancer]

Sorry I forgot to answer your couple of questions....I am now seeing just my family doctor who is fairly clueless, and a pulmonologist who ordered the sleep study and started me on Ropinerole. Judging from the test results AND the reports from my husband , I'm fairly certain I have both RLS and PLMD. That together with the depression which is slowly worsening makes for a pretty ugly mood! Gotta find that good doctor!! Now it's a quest....and IMPERATIVE!!!!

[nightdancer]

Lolly53 There is a sleep medicine doctor, who is also a neurologist, and does do some research, too. Dr. William Ondo, Baylor College, 6550 Fannin St, Houston, TX, 77030 phone # is 713-798-5975 I know some people who have seen him and really like him.