Nationally known RLS Doctors?

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Wassy
Posts: 37
Joined: Thu Feb 10, 2011 9:48 pm

Nationally known RLS Doctors?

Postby Wassy » Mon Apr 23, 2012 9:33 pm

I just read a recent post about Dr. Earley and a lack of response. I spoke with Dr. Earley today via email, a few times based on his research of RLS and the hopes he can do better for me. His responses were quick, but not thorough as I am not a patient yet. I am considering Dr. B, Dr. Earley and others that may shed some light. Have any of you any experience with other doc's that you recommend?

For me, a flight to Baltimore is a lot easier than to LA. That said, I'm looking for not only someone highly specialized, but also someone experienced enough to recognize my severity as a disability. I certainly have. Confirming a diagnoses I've recieved from multiple doctors alone, won't help much either medically or otherwise.

With the potential additional diagnoses of Chronic Fatigue, I've learned alot about that. Mainly that most doctors don't diagnose or treat it. The leading specialist in the field is right around the corner from me, Dr. Klimas, but she is a private practice, takes no insurance and hasn't returned calls or emails for a week now. She is primarliy a researcher.

I sent a fax to my current neurologist today, advising her that I withdrew myself from Neurontin. No reply yet to this or most recent 2 faxes. She thinks I'm nuts! On it only for a few weeks, I started to get whole body shakes/racing starting last wednesday. Took my last dose Friday, and quit. the shaking and the other side affects I had from day one, persisted throughout the day and drove me batty! I was taking only 300mg for a short period of time. I did get a few hours of sleep Sat & Sun, which was great, but still not refreshing. I go to cardio rehab M/W/F and although the youngest there, by far, I'm also the most tired and weakest of the other men. I'm stronger in muscle, but weaker on performance, if that makes any sense. My EKG also looks like a champ compared to the others. They are all great cardiac partners and we have dome laughs, which I need.

What I'm trying to do is narrow down a few docs that make sense to me, based on others experience. No point in flying around the country like a chicken without a head. Only a few really focus on RLS, others just treat according to public information available.

On a side note, bought some B-12 today, circumin and a bottle of carrot juice. All have rave reviews in aiding RLS and other issues, so why not? Don't think there is any harm in trying.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Nationally known RLS Doctors?

Postby ViewsAskew » Tue Apr 24, 2012 8:59 pm

I've heard very good things from most of Earley's patients, but a few who've not had the best experience. With one exception, I've heard great things of DR Buchfuhrer. Dr Rye in Georgia is awesome. There are a few others that people really like and who they've posted about....but the key is are they great AND will they see a patient from some other part of the country. Not all will. For what it's worth, I had great luck with Dr B.
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.

Wassy
Posts: 37
Joined: Thu Feb 10, 2011 9:48 pm

Re: Nationally known RLS Doctors?

Postby Wassy » Tue Apr 24, 2012 11:53 pm

Thank you. I haven't hear of Dr. Rye but will look him up as a
Possible alternative.

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Kimberly
Posts: 79
Joined: Wed Jul 20, 2005 3:06 am
Location: Columbus, Ohio

Re: Nationally known RLS Doctors?

Postby Kimberly » Thu Apr 26, 2012 5:03 am

Some years ago I had great success as a patient of Dr. Frankie Roman, who is one of the Directors of the National Sleep Foundation, but stopped seeing him when I moved hours away. Even with the long drive, I am considering making an appointment to see him again. He has offices in the Canton/Massilon area of Ohio, but I am told he has patients who travel from out of state to see him. I recall him prescribing Requip for me years before it was 'approved' for RLS....and remember on one of my last visits, years ago, that he talked about a medicine that would soon be tested....Lyrica. I've always considered him to be the best WED doctor I've ever been to....and believe me, there have been many...and, interestingly....Dr. Roman also suffers from WED, so he understands.

cornelia

Re: Nationally known RLS Doctors?

Postby cornelia » Thu Apr 26, 2012 9:56 am

Dr Rye has RLS himself too and I think 2 of his children as well.

I was tested for CFS (which I don't have) because of extreme fatigue which later I learned was from RLS and it's consequencesfor sleep. I think the CFS doc told me that the CDC criteria say that when you have fatigue issues because of to another illness you will never get a CFS diagnosis. I'm not sure if I remember well, butou might want to look it up.

Corrie

Chipmunk
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Posts: 655
Joined: Thu Mar 03, 2011 10:44 pm
Location: Madison, WI

Re: Nationally known RLS Doctors?

Postby Chipmunk » Tue May 01, 2012 6:09 pm

I am not sure if RLS is a specialty of hers, but the doctor I saw at Wisconsin Sleep (http://www.wisconsinsleep.org/) was so fantastic - Dr. Ruth Benca. She is dual-certified in sleep medicine and psychiatry and she LISTENS. My first appointment with her was two hours. Seriously. And not two hours seeing nurses or interns. Two hours with HER. I think my appt was for 10 am and I left there at 12:15. She made me feel like we were in this together.

Whether or not RLS is a specialty, she was definitely familiar with it and her first RX for me after diagnosing me was Mirapex. She also recognized the signs of augmentation immediately and took me off of it and didn't give me another DA. When we went through all the standard drugs for treating RLS, she came up with another one that I could try (Lamictal) and she was right, it did help. I have no doubt that if I wanted to go on an opiod that she would do it, but I'm not there yet (although getting closer to being desperate enough).

I don't think she's cheap, but I'm sure anyone would find her worth their time and money. The clinic is affiliated with the University of Wisconsin - Madison so they do a lot of research, and I'm sure would be open to looking at and discussing whatever study(ies) someone presented to them.

One thing is that Dr. Benca doesn't have very many appointments available as she teaches at the med school and does research as well, so you have to specifically request her when you are making an appointment. Otherwise you will get the doctor with the next opening. That person may be (and probably is) wonderful, but I have not seen anyone else there so I can't say either way. I have seen other UW physicians though and they have all been top-notch, but personally I would hold out for Dr. Benca. :wink:
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.


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