Doctor-Honest Opinion

For everything and anything else not covered in the other WED/RLS sections.
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Aiken
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Postby Aiken » Wed Nov 11, 2009 12:57 pm

I bet you could narrow down any list of potential RLS experts by talking to the doctor's assistant on the phone.

For instance, see if they've heard of the Mayo Clinic algorithm for RLS treatment. If the assistant says, 'yes,' then the chances are good that the doctor is also clueful. If not, you still have 399 more calls to make.

Ask about the doctor's degrees/specializations/certifications. Mine, whom I nowadays consider myself super-lucky to have, is degreed in neurology with a specialization in sleep medicine, and is also a degreed as a psychiatrist. He also specifically runs a sleep clinic. Not that a jerk couldn't do all of that, but it certainly bodes well if you can find it, and worked out well for me.

You could also try asking if they've familiar with Dr. B's stuff, or if they've been to conferences and/or CME classes *recently* about RLS and/or PLMD. The assistant will be familar with the doctor's schedule and should be able to answer this without any trouble. If you get vague or "Huh, I dunno," answers, the call's over.

Failing all else, you could ask what sort of medications the doctor has tried for RLS patients in the past. Is it all Mirapex and Requip, or do they try other stuff?

It also might be worth checking to see if a nearby university or hospital specifically has a clinic or center of some sort for sleep and/or movement disorders. Even if they can't actually help you there, they might have a good idea of who's been doing good work in the area.

Also check periodicals regarding sleep/movement disorders and see if any sensible white papers have been written in the area by someone you could contact for (help finding) treatment.

I just can't believe that 10% of the mass of hyper-stressed people in New York have no one to help them cope with their RLS. If they don't, someone needs to move there and make a bazillion dollars treating them.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

dogeyed
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Postby dogeyed » Wed Nov 11, 2009 2:33 pm

Hey Sleuth,
I think I mentioned this before, but you can also narrow the list by choosing docs that graduated in this decade... the chances are better they'll have more up-to-date training in how to treat RLS.

Also, in an effort to reduce number of docs on your list, you can produce a separate list with Internists, instead of neurologists, could be you'll get even lower numbers of docs than neurologists. Or, I think I had also suggested this, you can create a list with YOUR zip code instead of the general one for NYC, and that might reduce size of list.

When you finally get a list that you want to work with, highlight the ones who graduated in this decade, to reduce size of list. Then any docs on that list who have the same phone number, cross out all but ONE of those. You could additionally do a search online for any websites of the docs that are left to call, and if any have RLS mentioned specifically there, star those and call them first.

Also, when you give to the chosen doc that Mayo Clinic paper that describes what meds treat RLS, just tell the doc what medicines you have already tried on that paper that don't work. That way, HE can choose to narrow it down to opiates, rather than you advising him to do that. Keeps you from looking like a drug seeker. If he decides to make you jump thru hoops and try them all again, do so, but make sure you have a followup appointment set up in, say, two weeks' time, so he can see how you're doing with the medication and change it quicker that way.

And as for another part of this thread about Dr. Early, most definitely contact Dr. Early's offices and ask for the record that made suggestions as to which medications you should be taking, bring it to the doc you'll visit. In fact, you could probably just bring that paper to an ordinary Pain Clinic, which you can find them in the phone book, and they'll flat-out follow his instructions.
GG
"It's not how old you are; it's how awful you feel."

Sleuth
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Postby Sleuth » Wed Nov 11, 2009 6:01 pm

I have been to every major hospital in NYC. If they have an RLS dept, it is one or two doctors with very little experience. They do not prescribe opiates.

I have asked every doctor I know for an RLS doctor. None know of any. I know this sounds bizarre in NYC, but this is the reality.

I found the telephone number of a "support group" in NYC for RLS. When I called, a woman answered. She was the "support group." I asked if she knew of any RLS doctors in the City. She replied that she did not and if I found anyone, would I please call her and let her know.

In New York, there are no doctor assistants. There are receptionists, clerical staff and, occasionally, nurses. If I asked anyone who answered the phone any of those questions, they wouldn't have a clue what I was talking about. Most only make appointments and process insurance claims. Again, this sounds crazy, but that is how it is in NYC.

I did start to check some of the doctors on that list. Most do not list the year they graduated. Of the 25 I checked, none are RLS doctors. They run the gamut from gyn to you name it. I have no idea how they got on that list. I can tell you with certainty that there are nowhere near 400 RLS doctors in NYC. From what I can tell, there may be four and I've seen all of them. They aren't really RLS doctors either. All have another specialty and dabble in RLS.

This is the reality.

Dale

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Neco
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Postby Neco » Wed Nov 11, 2009 6:10 pm

Well, are you close to Jersey ?

You could maybe look up people there? See if they're willing to work with someone from next door. I know you can transfer at least Vicodin / Tylenol #3 across state lines. I've had to do it before.

dogeyed
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Postby dogeyed » Fri Nov 13, 2009 10:40 am

Dear Sleuth,
Look, I decided I'd take an hour of my time and make life easier for you. Now, I just went through SOME of the doctor lists at that website I gave you, took me less than an hour, and I've copied and pasted four group practice docs for RLS in NYC that graduated this decade, that you can call today (I put two docs from each practice). Ask at the desk if they are familiar with treating Restless Legs, and if so, just make an appointment and get their address from them. Bring Dr. Early's recommendations.

First I went thru the combined lists for RLS of both neuro and internists, one-tenth of them, just picking out those who graduated this decade, and matched phones. Then I just went thru the neurologist list, half of them, and picked out recent grads there too. Below are just their names, specialty, year they graduated, and phone, to save space. By the way, in the last bunch, Dr. Krieger, a Neurologist, he went to Yale.

Jonathan L Arend, MD, Internal Medicine 2004, (212) 924-2510
Andrew Tzellas, MD, Internal Medicine 2000, (212) 924-2510

Keith M Rose, MD, Internal Medicine 2000, (212) 492-5500
Erica A Vero, MD, Internal Medicine 2004, (212) 492-5500

Jaydeep M Bhatt, MD, Neurology 2002, (212) 213-9339
Farng Yang A Foo, MD, Neurology 2002, (212) 213-9339

Stephen C Krieger, MD, Neurology 2002, (212) 241-6854
Teresa M Deangelis, MD, Neurology 2001, (212) 241-6854

Hope this helps you, Dale. I just thought if you really want to get some good steady treatment for RLS, that website might be the key. My desire to help people is great, and things like this are so easy for me, that I felt it was worth a few minutes to give you a few group practices to try.
GG
"It's not how old you are; it's how awful you feel."

Sleuth
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Postby Sleuth » Fri Nov 13, 2009 12:44 pm

Thank you!! That's so nice of you.

I have started checking them out on Google.

The three I checked do not deal with RLS. I really don't know how all those doctors show up on an RLS search. It's insane.

Dale

Polar Bear
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Postby Polar Bear » Fri Nov 13, 2009 7:13 pm

Dogeyed, what a nice thing to do :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

dogeyed
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Postby dogeyed » Sun Nov 15, 2009 5:32 pm

Thanks Polar Bear. Sleuth, I checked out the docs on the list I gave you before, and while it led me to the below CORRECT places to get help, the original link I threw out there some days ago is really not a good one, as you felt from the start. Sorry I led you down that path. Anyhow, I did indeed find some medical centers who really and truly know about RLS, three are below, and I couldn't retrace my steps for finding them if my life depended on it. When you go to the websites, just click on "Services" in their menus, it will take you to the departments where they know about RLS. So, I'm done with this train of thought finally, I just hated it that you are NYC and you cannot find someone who can treat you, but you're right, it's hard to find one. But many neurologists and other docs DO know how to do it, but the hit and miss trial you've been thru should stop here, I hope. GG

www.rwjuh.edu
Clinical Neurosciences Center, New Jersey
(732) 235-7733

The above is the Robert Wood Johnson University Hospital in New Jersey. There was a neurology physician there who recently passed away, and he was real big on RLS, wrote about it and did speaking engagements on the subject. Therefore, if you'll contact the above Neuro Center, a service the hospital provides, you should get the help you need.
___________________________
www.montefiore.org
Sleep Disorders Center, the Bronx
718-430-3164

The above is the Montefiore Medical Center in the Bronx. There are a couple physicians there that are interested in RLS, the director has written about it and another doctor is doing research on it. So, if you'll contact the Sleep Center part of their Neurology Department, a service the medical center provides, you should be able to get assistance.
____________________________
www.mssm.edu/hospitals/northshore/services.htm
Northshore Neurology Department, Long Island
631-351-3815

The above is the Mount Sinai Northshore Medical Group in Long Island. There is a neurologist there who specifically treats RLS. I found it by looking at docs with Mt. Sinai, and since that hospital's website is so unwieldy, I went ahead and gave you the full link to the associated hospital's services. They should be able to help you.
.......
"It's not how old you are; it's how awful you feel."

Sleuth
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Postby Sleuth » Sun Nov 15, 2009 6:45 pm

I don't know what to say. This is beyond nice! This ranks up there with some sort of Nobel Prize thingie.

I have to tell you about all there.

First, the one in New Jersey is near Philadelphia, which is a very far from NYC. Not only do I not drive, I wonder what seeing a doctor so far away will do for me if I need ongoing care. I might call, though, to see if they have any ideas.

The Mt. Sinai North Shore Medical Center is in Long Island. That's quite a shlep, but I can take two trains and a cab from the train station. The thing is that the last doctor I saw was with Mt. Sinai in NYC, so I'm wondering what they have in the North Shore Medical Center. I'll call though. They might not be affiliated with the one in NYC.

I went to the Montefiore Sleep Center two years ago. That was the first place I went to before the RLS became so bad. I went because my shrink wanted me to be tested for a sleep disorder. I filled out the zillion page questionnaire, gave it to the receptionist who handed it over to someone else. After looking at it for one minute, that other person handed me over to the social worker there who recommended I see a psychotherapist in NYC. End of consultation. They never tested me for anything; they never asked me a single question. I never even saw a doctor. The way they treated me was beyond words. I could never trust a place like that again.

I checked the Mt. Sinai website. The neurology dept. only has one doctor listed. All I could find out about her is that she was plead guilty to a DUI in 2006. :roll:

Dale

dogeyed
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Postby dogeyed » Mon Nov 16, 2009 2:17 pm

Sleuth,
Sigh. Well, I won't try to find docs in a distant city for people no more. Dale, when I first got my symptoms of RLS in 2003, I thought it was from tearing up tendons and ligaments in my foot when I fell down one time. But it was the limping from it that aggravated my old back injury that triggered the seizing-up in my legs. By 2004, after losing a lot of sleep with this thing, I went to see my regular doc. She pegged me right off the bat for RLS and gave me Tylenol Codeine #3, referred me to my neurologist, and that night I came home and took that pill, and wham, I was knocked out until late the next morning. Talk about bliss. I was healed! The neuro tried all categories of meds on me, and decided to stick with what my general doc gave me in the first place, which I still take today.

Point being, since an ordinary doc knew about RLS and how to treat it for me, I am sure there are internists, family docs, and neurologists by the hundreds in NYC who know how to treat it, but there's no way to know who they are; it's just part of their training. All my docs are younger adults, plus I live in an area where many counties are served by a Trauma Two hospital, all of which my docs are affiliated, so we have excellent health care providers here. I should think the same would go for NYC.

What I suggest again is get Dr. Early to mail you some sort of record of your visit with them, what medications they suggested you should take, and take that there paper to any Pain Clinic in the city and see can you get treatment. I may be well-meaning, but I can also be stupid. Smile.
GG
"It's not how old you are; it's how awful you feel."

Sleuth
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Location: New York City

Postby Sleuth » Thu Dec 24, 2009 8:23 am

Dogeyed,

You are not stupid in any way.

I am still without a doctor for my RLS, which gets worse each day.

I heard from the original doctor I was seeing. I went back to see her, but the same thing happened. She prescribed Ripinole and told me when to take it. She said I should email her to let her know what happened. It didn't work after a few days, so I emailed her. When she didn't answer me in a few days, I stopped taking the medication, which was after four days of taking it. My symptoms get much worse when I stopped so I emailed again asking if it was augmentation. Two days later, she responded that she didn't think so. I begged her to prescribe something else because I was suffering so from the RLS. Three days later she emailed with two suggested drugs, neither of which I had heard of. I couldn't find them on the net so emailed back asking about them. That was six days ago. I still haven't heard back from her.

I can't work with a doctor who prescribes a medication and that is unavailable when you are having problems with it. That is insane. I emailed her and told her that I thought her behavior was unprofessional, not to mention very unkind. It's funny because I was upset when I had the run in with her because I felt as though I had lost "my" RLS doctor. In truth, I never had one. I have been seeing her for over 7 months and the only thing she did for me was refer me to Dr. Earley.

I have found a new psychiatrist who I hope will be able to help with the depression. He has yet to prescribe anything. Right now he's gathering records from all my doctors so he can see what I've taken in the past and my health, in general. When I asked if he knew a RLS doctor, he said he could prescribe RLS medications for me. I don't want him to do that. He knows absolutely nothing about RLS.

I have asked every doctor I know if there is anyone I can see about the RLS. None, but none, had any suggestions. Other than being familiar with the initials, most knew nothing about it.

I feel as though I've fallen between the cracks. I have never been so depressed in my whole life. I have put on over 30 pounds in the past four months. Eating is the only way I can watch television for even a little while. Food has always been my drug of choice anyway.

I am also under a ton of stress from non-RLS life issues, which doesn't help.

Please forgive me for kvetching, but nobody knows the despair I feel. I have lost hope which is the worst thing to happen to anyone. I haven't had a life or a moment of peace, let alone any happiness, in over 2 years when the RLS really kicked in big time.

Oh, well, what can I say. Forgive me. I just had to say how I feel. I know it doesn't help one single soul in this world, but I can't help it.

Dale

Betty/WV
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Postby Betty/WV » Thu Dec 24, 2009 11:34 am

Hi Sleuth: Just read your post, I feel so bad for you. I understand exactly how you feel. Been there, done that! I can sympathize with you, but I wish I did, but I don't have the answer. It is a matter of not giving up, keep trying to find someone to help you. And I know how hard that is.

I remember the first time I posted on this site. Standing up at the computer, crying, in the middle of the night, I was in so much misery. And when I received answers, compassion, caring, etc. from those who read my post. It was the first time anyone understood. Friends and family know I have RLS, but they don't see me up at night, walking the floor, sitting in the bathtub with hot water, trying to find something to give me relief. Someone called RLS a demon, and that it is.

My family doctor sent me to a young neuro, hasn't been in practice long. I found out he doesn't know much about RLS. But he did put me on Mirapex, and I have found relief, thank God. The RLS isn't gone but I am better able to deal with it. And my new neuro is willing to work with me. I have taken him information on augmentation, (which he knew nothing about) but at least he is honest and admits it. I also took him the Mayo Clinic Algorithm, hopefully he will read them.
And all this was after suffering some 30 or 40 years, and as I got older it got worse.

So please don't give up, keep trying. Keep looking for that one doctor that will at least be willing to try to help you. I know its hard and you just want to quit trying. But there are people here who care.

BTW have you ever emailed Dr. B and ask for his help. I have emailed him in the past and he always answers back with a day or two. And if you can, read his book, "Restlegs Syndrome, Coping with Your Sleepless Nights." It is a great handbook for us RLSers.

I'll be thinking of you. Would like to continue to hear how you are.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
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Postby Polar Bear » Thu Dec 24, 2009 1:26 pm

Sleuth, things are so awful for you at present, and I send best wishes.

I agree that you should email Dr B. He has also always responded to me really quickly.

I may be way off beam here, but if your psychiatrist can prescribe medications for you, is it possible to work with the psych using the Mayo Clinic Algorithm, especially if you also had some advice via email from Dr B.

Never ever apologise for venting on this site, it has been my saviour many times. We are here to try and support. This is where I learned how to cope as best I could, what meds to try, and also where I heard of Dr B.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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Neco
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Postby Neco » Thu Dec 24, 2009 2:12 pm

I also suggest acting your psych if they will consult the Mayo algorithm and maybe prescribe something for you.

I don't know if psych's can, as a practicality, prescribe opiates though. Its wishy washy territory depending on where you live, I think.

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SquirmingSusan
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Postby SquirmingSusan » Thu Dec 24, 2009 7:38 pm

Dale, it doesn't matter what kind of doctor prescribes you the RLS meds, as long as the doctor cares and is willing to work with you. Any doctor can prescribe dopamine agonists or opioids or whatever. I've hear of psychiatrists treating sleep disorders and RLS. If anything can cause depression and psychiatric disorders, it's lack of sleep! If your psych is willing to read and follow the Mayo Clinic thingee or books by leading experts, then that's the best of all worlds. Please let the doctors help you who want to help you.
Susan


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