Can anyone offer a suggestion for a doctor in the U.S. that specializes in extreme (refractory) Restless Leg Syndrome and is taking patients for ongoing mgmt and treatment? I am willing to fly to visit one that is up to speed on the newer treatments and has experience treating tough cases on a regular basis. The area in which I live offers limited resources for specialists in this field and my RLS has been classified as being quite severe. I don't know if this type if question if prohibited on this site but don't know where else to turn? Does Doctor B see patients? Anyone who saw my question on a different post earlier today knows why I am inquiring.
Thanks.
Recommendation for RLS doctor
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ViewsAskew
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Re: Recommendation for RLS doctor
Several of us have flown to see Dr B. It's worth it - at least it sure was to me!
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Re: Recommendation for RLS doctor
How do I get in contact with Dr. B?
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ViewsAskew
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Re: Recommendation for RLS doctor
somno@verizon.net is his email. I think I just searched on his name and Downey California to find the phone number. Mark Buchfuhrer...
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Re: Recommendation for RLS doctor
Thank you. I'm going to call tomorrow.
Re: Recommendation for RLS doctor
Thank you, thank you! I corresponded with Dr. B tonight via email and my faith has been restored! He was very prompt at responding, in fact I was listening to one of his presentations online when his email came through. What a breath of fresh air.... I have asked if he will consider a consult with me and am awiting a reply. I really appreciate your suggestion more than you can possibly know 
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ViewsAskew
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Re: Recommendation for RLS doctor
I hope it works out. He is usually very good about working with people who don't live close to him. He requires an annual visit, then will work with your own doc or will FedEx scripts. He always responded quickly to my emails and was excellent about working with me to find solutions. He trusted me with extra drugs to cover symptoms and trusted me when I would stop something even if I had a lot of it left. He truly wanted me to be better.
I went to him because I couldn't continue on the methadone. For whatever reason, I'm one of the few that needs increasing doses over time. Studies show this rarely happens, but it did to me. I started at ten mg, went to 15 within a few months. he said I was likely not on a high enough dose when I started. I didn't want to take 15, so I took 12.5 for as long as I could - maybe 6-8 months. Then I needed the 15. 10 months or so later, I needed more. I toughed it out for a year, not wanting to go to 20. I slept badly the entire time. I finally went to 20. It had stopped working and I knew that I only had two more increases and then I had no more options, as 30 mg is the limit for methadone for WED. To make it worse, methadone paradoxically awakens me after I take it, but makes me verrrrrry lethargic the next day, and my brain was like molasses when I'd awaken. I remembered nothing during the day. I couldn't even come up with simple works. At these higher doses, I'd lost any drive or desire to do anything - I slept all day. I took my first dose (5 mg) in the late afternoon, and then I started to wake up and feel more normal. By midnight, when I had taken all 20 mg, I was wide awake, my brain worked, and I felt normal....but it was midnight! I never could go to sleep until 5 or 6 AM. Not a good place to be and try to work or have a life.
I'd already tried anti-seizure meds, but they didn't work and I'd augmented on three dopamine agonists. Not many options. I hadn't been working much because of the sleep and memory issues and really couldn't afford to go. I stayed with a friend and found the least expensive flight I could find. I had no insurance, but it wouldn't have mattered as it probably wouldn't have been accepted there. My brain was so mushy that I actually showed up at his office on the wrong day. I was supposed to be there the next day - but my flight was leaving an hour before the appointment. They fit me in.
He listened, validated my experience, and made me feel that if there was a solution, we'd find it. After we started looking for solutions, If I said something didn't work, he believed me, even if it didn't make sense. For some reason, every opioid we tried caused muscle tension and would make me angry and grumpy and I'd clench my jaw. This greatly exacerbated a condition I already had, call myofascial trigger points, which in turn caused blindingly awful headaches, neck aches, and a frozen shoulder - I literally couldn't move my shoulder because it hurt so much. He was stumped by it and said it made no sense - I mean they give opioids for pain - but they didn't touch this pain. Even though it made no sense, he believed me. Each time after a few weeks or a month, I'd email and say that I couldn't stand it anymore and could we try the next one. He worked with me through at least 5 or 6 tries to come up with something that would work.
When I was down to only two opioids I hadn't tried (except giving myself morphine shots), I was terrified. I asked him if a person could avoid augmentation if they took a dopamine agonist every other day. He said yes. Then I suggested that we try alternating the methadone - which didn't cause the trigger points and jaw clenching - with Mirapex. He said go for it. It's unconventional, but it works. It's been about two years, I think, since I started it. I haven't augmented and I haven't had to increase the methadone, either. Those are both miracles.
I'm struggling with it, but I just landed a project with a client where I need to work 80 hours over the next two weeks and be at the client's site about 80 percent of the time, at 9 AM. It's hard, no question, and I couldn't do this full time, but I can do it for two weeks. I couldn't have done this two years ago. I couldn't have worked two days.
I went to him because I couldn't continue on the methadone. For whatever reason, I'm one of the few that needs increasing doses over time. Studies show this rarely happens, but it did to me. I started at ten mg, went to 15 within a few months. he said I was likely not on a high enough dose when I started. I didn't want to take 15, so I took 12.5 for as long as I could - maybe 6-8 months. Then I needed the 15. 10 months or so later, I needed more. I toughed it out for a year, not wanting to go to 20. I slept badly the entire time. I finally went to 20. It had stopped working and I knew that I only had two more increases and then I had no more options, as 30 mg is the limit for methadone for WED. To make it worse, methadone paradoxically awakens me after I take it, but makes me verrrrrry lethargic the next day, and my brain was like molasses when I'd awaken. I remembered nothing during the day. I couldn't even come up with simple works. At these higher doses, I'd lost any drive or desire to do anything - I slept all day. I took my first dose (5 mg) in the late afternoon, and then I started to wake up and feel more normal. By midnight, when I had taken all 20 mg, I was wide awake, my brain worked, and I felt normal....but it was midnight! I never could go to sleep until 5 or 6 AM. Not a good place to be and try to work or have a life.
I'd already tried anti-seizure meds, but they didn't work and I'd augmented on three dopamine agonists. Not many options. I hadn't been working much because of the sleep and memory issues and really couldn't afford to go. I stayed with a friend and found the least expensive flight I could find. I had no insurance, but it wouldn't have mattered as it probably wouldn't have been accepted there. My brain was so mushy that I actually showed up at his office on the wrong day. I was supposed to be there the next day - but my flight was leaving an hour before the appointment. They fit me in.
He listened, validated my experience, and made me feel that if there was a solution, we'd find it. After we started looking for solutions, If I said something didn't work, he believed me, even if it didn't make sense. For some reason, every opioid we tried caused muscle tension and would make me angry and grumpy and I'd clench my jaw. This greatly exacerbated a condition I already had, call myofascial trigger points, which in turn caused blindingly awful headaches, neck aches, and a frozen shoulder - I literally couldn't move my shoulder because it hurt so much. He was stumped by it and said it made no sense - I mean they give opioids for pain - but they didn't touch this pain. Even though it made no sense, he believed me. Each time after a few weeks or a month, I'd email and say that I couldn't stand it anymore and could we try the next one. He worked with me through at least 5 or 6 tries to come up with something that would work.
When I was down to only two opioids I hadn't tried (except giving myself morphine shots), I was terrified. I asked him if a person could avoid augmentation if they took a dopamine agonist every other day. He said yes. Then I suggested that we try alternating the methadone - which didn't cause the trigger points and jaw clenching - with Mirapex. He said go for it. It's unconventional, but it works. It's been about two years, I think, since I started it. I haven't augmented and I haven't had to increase the methadone, either. Those are both miracles.
I'm struggling with it, but I just landed a project with a client where I need to work 80 hours over the next two weeks and be at the client's site about 80 percent of the time, at 9 AM. It's hard, no question, and I couldn't do this full time, but I can do it for two weeks. I couldn't have done this two years ago. I couldn't have worked two days.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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badnights
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Re: Recommendation for RLS doctor
Dr. B has saved the lives of a number of us, by working with Ann like that, by calmly answering our questions and pointing out that there are things yet to be tried, mostly by believing the agony of WED and really wanting to end it for his patients. By freely giving his time to total strangers in desperate need.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
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Polar Bear
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Re: Recommendation for RLS doctor
Also, if someone sees Dr B and then reports back to the discussion board about the visit, it helps all of us.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
Re: Recommendation for RLS doctor
WOW this guy sounds AWESOME!!!!
Re: Recommendation for RLS doctor
I want to thank all of you who recommended that I get in touch with Dr. B. I flew to Downey and met with him yesterday. He has given me my life back. Sounds dramatic but those of you with 24/7 symptoms will totally understand. What a breath of fresh air it is to finally find a doctor who "gets it". Thank you, thank you, thank you... 
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ViewsAskew
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Re: Recommendation for RLS doctor
So glad it worked out well for you.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Polar Bear
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Re: Recommendation for RLS doctor
Delighted that your visit with Dr B was so positive.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
Re: Recommendation for RLS doctor
rlsidaho wrote:I want to thank all of you who recommended that I get in touch with Dr. B. I flew to Downey and met with him yesterday. He has given me my life back. Sounds dramatic but those of you with 24/7 symptoms will totally understand. What a breath of fresh air it is to finally find a doctor who "gets it". Thank you, thank you, thank you...
I felt the EXACT same way!!! I had my first nap in 3 years after I saw him. It was a little miracle in my life. Enjoy your victory
jy13131