Hi all. I just moved to Massachusetts from Colorado (missing colorado a lot but that's a long story). I have refractory RLS, having augemnted on ropinerole and pramipexole. (Of note I also augmented on kratom which is a very sad thing and leaves me with few options). anyway, having arrived in the area west of Boston I thought I was now in a medical Mecca! and would be able to get great specialist care for my RLS. not. I am a physician, i went to Harvard Medical School and retired early at age 58 because I was too impaired by sleep-deprivation to make clear decisions and provide good patient care. But even though I went to Harvard Med when i tried to get an appointment with the RLS guru, Dr. Winkelman, at MGH (a Harvard affiliate) I was denied because i had the wrong kind of insurance! I ended up going to a young neurologist "within network" for my insurance plan, who supposedly is also boarded in Sleep Medicine, but I was pretty underwhelmed. she has the compassion and bedside manner of a houseplant (sorry, that's not fair to houseplants). Also, she chose not to obtain a DEA license to prescribe opioids so she could avoid having to deal with such people.
My question for the forum: does anyone in Massachusetts know of a good doctor, especially a primary care doctor, who knows how to treat RLS and understands how it destroys lives?
P.S. Dr. Winkelman, if you follow this forum at all, can you please throw me a bone??
RLS Doc in Massachusetts?
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Re: RLS Doc in Massachusetts?
Welcome to the challenge of fighting the medical establishment and insurance companies, especially for those of us who need opioids to treat refractory RLS.
If you can't get in to see Dr Winkelman (or any of his staff), you might also want to try Dr Khoo at Yale. Yes, that is in CT, but his license may allow him to write scripts in MA since it is a neighboring state. Dr Khoo also sees patients at a VA in CT, if that helps.
If you can't get in to see Dr Winkelman (or any of his staff), you might also want to try Dr Khoo at Yale. Yes, that is in CT, but his license may allow him to write scripts in MA since it is a neighboring state. Dr Khoo also sees patients at a VA in CT, if that helps.
Steve
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, and are not medical advice.
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, and are not medical advice.
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- Joined: Thu Aug 25, 2022 7:03 pm
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Re: RLS Doc in Massachusetts?
Thank you! Still not sure what my insurance co will do. the problem is I don't know how long I can hold on without effective treatment. I think I may need to get some sort of prior auth from my PCP (seen just once; doesn't know much about RLS but may be amenable to education by his patient lol). who knows, may even be willing to prescribe opioids, but I know from my own experience being a physician, that as soon as a patient says the O word the doctor's anal sphincter goes into clonus and the patient is labelled as a "drug-seeker." More irony: If I get refused by Yale I will have been refused by both my alma maters.
BTW, I just started pregabalin , taken 3 nights and have had "interesting" experience. actually potentially life-threatening since the suicidal ideation was powerful. I will post my experience in another thread for meds. Quite horrible.. .but will stick with it a little longer. Not ready to die yet.
BTW, I just started pregabalin , taken 3 nights and have had "interesting" experience. actually potentially life-threatening since the suicidal ideation was powerful. I will post my experience in another thread for meds. Quite horrible.. .but will stick with it a little longer. Not ready to die yet.
Paul
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Re: RLS Doc in Massachusetts?
Just re-read my last post and it sounds very flippant and pompous. I'm sorry. I am not used to these discussion boards and have not learned proper etiquette. I'm really not that person. And of course, I just don't feel very well and am cognitively impaired by chronic sleep-deprivation, medication side effects, withdrawal sx, feeling frustrated by the corporate medical system; plus on top of everything I am day 6 COVID-19 infection. Ugh.
Paul
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Re: RLS Doc in Massachusetts?
I found your post eloquent and informative and not at all pompous. Many times, many of us come on and we rant, we vent, we get our frustrations off our chests. Myself included.
We do what we can to support each other and a little humour and kindness never goes amiss.
Never be fearful of saying honestly how you are feeling.
We do what we can to support each other and a little humour and kindness never goes amiss.
Never be fearful of saying honestly how you are feeling.
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