What Kind of Doctors Treat Your RLS?

[Kwazylegs]

I don't know if this has been asked before, but in an attempt to identify in what general practice or specialty good RLS doctors might be found, can anyone here tell me what type of doctor effectively treats your RLS?

Let's set up a few categories of doctors: 1) General Practice, Primary Care, or Family Medicine; 2) Pure Neurologists; 3) Sleep Specialists; 4) Pain Management Specialists.

I know that good RLS doctors can be found in any of these (and perhaps other) categories, but I'd like to know from your experience what kinds of doctors are providing good care to you in managing your RLS.

If you haven't guessed, although my primary care doc is great, I'm still looking for a good RLS doctor, and am curious as to what kinds of doctors are providing good care to all of you.

Thanks, and wishing you all a peaceful night's rest.

---Andy

[ViewsAskew]

Andy, I think we'd all agree on only one thing: the type doesn't matter, the doctor's personality does.

There are some people here with neuros, some with sleep docs, some with each that you have names. None are better than another, truly.

There are potential pros and cons to each. For example, I have yet to find a neuro who can see past his or her own perspective. They appear to think they know everything (in my case) and refuse to see any other options (such as reading a new book, listening to an email from Dr. B, etc.). But, a bunch of people have very good neuros who do listen and work with them...and if I tried 50, I'd bet I'd find a couple or three, lol.

My family doc was best....in one way. He listened, he talked to Dr. B, he tried. But, he didn't ever research it himself (sort of relied on me) so when things stopped working so well, it was up to me to suggest things. I can do that, but it's not a role I want! I want my doc to know more than me and to tell me about new research, etc.

But, just my opinion.

[SquirmingSusan]

Well, I'll answer the question.

I'm being treated by two kinds of doctors - my pain doctor has provided most of the care until now, prescribing methadone, gabapentin, and Provigil. He also prescribed clonazepam to help with sleep, but it was way too sedating for me for too long.

I've also had off and on treatment from family doctors and internists. A family doctor prescribed iron infusions for me about 1-1/2 years ago, but wouldn't prescribe ANY controlled meds to anyone, so I don't see him anymore. I'm back to an internist who has worked with me for years, and she has recently ordered iron infusions for me. She has prescribed diazepam for me in the past for my vertigo, and it effectively covered my RLS during that time. She has worked with me on other things, like finding an antidepressant that doesn't bother my RLS or keep me too sedated.

So, doctors who are treating my RLS are 1 and 4.

I've tried to find a sleep specialist who is knowledgeable and willing to treat my RLS, but haven't succeeded. Same with neurologists. But I have seen a sleep specialist/neurologist who is good. But his billing department has taken over 1-1/2 years to get things billed right to my insurance... But if I need more expert treatment I'll go back to him, or fly out to see Dr. B.

[Polar Bear]

Hi Andy

My GP is my best ally - see Views quote below:

My family doc was best....in one way. He listened, he talked to Dr. B, he tried. But, he didn't ever research it himself (sort of relied on me) so when things stopped working so well, it was up to me to suggest things. I can do that, but it's not a role I want! I want my doc to know more than me and to tell me about new research, etc.

Ann could be speaking of my doc - he is pretty good, but it is up to me to keep up the work when I'd like his educated input.

[Neco]

My doctor falls under #1.

Like Ann, I really have done most of the research and brought it to him, but he has almost never turned down looking at something I bring it, and sometimes if I specifically ask him to look into something he usually does it. However I still would never have known what was going on if he didn't provide me with at least the names and terms to search for.

I think its more of his style of educating his patients, and its clear to me he really tries to help people, because I have done some things under his care that most doctors would want to shoot their patients for doing, but I'm still his patient.

[Kwazylegs]

Ann, Susan, PB, and Zach,

I kind of knew beforehand what the answers to my question would be...I just needed confirmation of my experiences/observations.

In my experience, of 4 neuros I've seen in the past 7 years, not one of them had the inclination to reach out beyond his "comfort zone" of practical knowledge, and all of them treated me by "classic" approaches and didn't appear to be interested in acquiring new knowledge/research findings.

And although he depends on other doc's knowledge of RLS, my PCP has been the most willing to try to help me with my symptoms.

And Ann, like you, I'd rather have a doctor educate me on new options to treatment of my RLS, but so far I've not been successful in finding a doctor like that. I guess finding an RLS doctor in the medical community is kind of like expecting to get a good pizza in a Chinese restaurant.

I think I'm going to keep trying to work with my PCP, providing him with the knowledge that I come across here in the RLS community, and with names of noted RLS docs in other parts of the country (like Dr. B) who my PCP might want to contact. My doctor's willingness to try to help me is probably the most important thing in helping me with effective treatment, and as long as he tries, I guess I should be grateful.

Thanks for the replies, and hope you all have a great day!

And Zach, I'm happy that you have the doctor that you do...I've done some "unusual" medication adjustments in attempting to find the combination that works for me, and my doc is ok with that.

---Andy

[ViewsAskew]

Andy,

Barry Levy is in Des Plaines. I called his nurse about 4 years ago and she seemed to feel he was qualified to handle tougher cases of RLS. BUT - I haven't seen him, so do not know.

I called 30 doctors in the Chicago area and spoke with nurses. Some nurses made it very clear that their docs wouldn't have a clue about helping someone who'd augmented and had 24/7 RLS.

Out of that list, I've seen:
Dr Comella
Dr Kompiloteri
Dr Bertrand
Dr Burnstein
and two sleep docs who weren't on the list, but whom I worked with after Dr Comella sent me for a sleep study.

Dr Bertrand thinks he's an RLS expert. He gives talks about it. Yet, when I saw him he told me he'd never prescribed methadone in his 20 years treating RLS and probably never would. Huh. Now, I'm not saying you have to use methadone, but it is one of the more common opioids used in tough cases.

Dr Burnstein didn't recognize augmentation and had me continue escalating my drug dose.

Dr Comella wanted me to wait until the dopamine patch came out (I was augmented at the time). It came out 18 months later. That would have been fun. NOT. In the three of four months I worked with her, she was extremely nice, very funny, pleasant, but she wouldn't go the opioid route. Now, maybe she does today, but not then.

I think you get the picture. Probably very similar to yours, I imagine.

I am working on a survey to send to local doctors. If you want to help me, I'd love the help. We'll need to call and then fax it to as many neuros, sleep docs, and/or GPs as we can. I am saying it's for the local RLS support group to identify physicians who are capable of treating RLS patients.

[ViewsAskew]

I also think we may have a couple of newer choices.

In doing some research about RLS, I found this:

Celiac Disease as a Cause for Low Serum Ferritin in Patients with Restless Leg Syndrome – PI: Shalini Manchanda, MD, Internal Medicine, CCA; Assistant Professor Clinical Medicine, UIUC College of Medicine

* Purpose: Charts of approximately 100 patients in Carle Sleep Disorders Clinic under the care of Dr. Manchanda or Dr. Picchietti will be reviewed to determine if there is a relationship between those with RLS and low serum ferritin levels (<25mcg/L) and a history or symptoms of celiac disease. The investigators believe there may be a subgroup of RLS patients who have celiac disease as the underlying cause of their iron deficiency. If true, a determination will be made as to whether a formal, funded study of this phenomenon is warranted.

-----------------------------------------------------------------------------------

I met Dr Picchietti this summer. He did seem to get the total picture; he was speaking at the regional RLS conference in Chicago.
Champaign is a possible road trip - not fun, but doable. And, better than trying to get to California, though California sounds more fun....

[ViewsAskew]

This is a likely candidate for sending the questionnaire/survey:

Chicago Sleep Group

But, in my searches over the last ten minutes, this is all I came up with for RLS and Chicago.

[Kwazylegs]

Ann,

Thanks for sharing your experiences with specific doctors...I'll print your reply, and do some research. I'll also make another appointment with my PCP, and ask him to what lengths he'd go to treat RLS patients... referrals to specialists, prescribing medications on the algorithm, etc.

Also, let me know how I can help with your survey...I think it's time for some way of identifying docs who are willing and capable of treating our problems. It probably isn't important, but I live in the Aurora/Naperville area of the western suburbs.

Let me know.

---Andy

[Kwazylegs]

Ann,

When I saw the Spalding Ave. address for one of the sleep groups locations, I feared that one of it's docs might be the "sleep specialist" that said that "insomnia isn't really that great of a problem."! Fortunately, he wasn't on their list of treating physicians.

So do you want me to contact this group?

Let me know the procedure you want me to follow to make the survey successful, and I'll help in any way I can.

---Andy

[ViewsAskew]

Will do - it will take me awhile to finish things as I've got a bunch of stuff on my plate right now.

[SquirmingSusan]

I think we need to start a dedicated thread about our survey project. Maybe a sticky post in the "General Topics" section? At least until we start our own non profit organization... So far I think it's Ann, myself, Zach, and now Andy who have expressed an interest in helping with this.

[dogeyed]

Kwazy,
The way it worked for me is I had a good general doc who pegged me for RLS right off the bat when I came in a told her I was going to die. She gave me the medicine I'm on now. And then she referred me to my neurologist, another good doc, to confirm the diagnosis and work on medications with me. We tried them all, and in the end I stuck with what my general doc gave me. The neuro has been taking care of the RLS part of me ever since. He also took over my back problems from my car wreck and the medicine for it.

I live in a community where the hospital is huge, helicopter and all that jazz, they serve many counties in this mountainous area I call home (altho I prefer the beach). I think the reason I have good docs is because I do live in a city where the hospital and all the specialties surrouding it are big-time and plentiful. If you want good treatment, therefore, I would suggest you get connected up with such a place, or even where there's a university hospital will do fine, and travel twice a year to see a doc in that kind of locale.

You can look online for the "Top 10" or top 50 or whatever hospitals in the country, and it'll give you all sorts of choices, one might be in your state. Otherwise, go to a city where the state university is, that has a medical school hospital associated with it.
GG

[ViewsAskew]

Last night, after thinking about this more, I decided to email Dr Picchietti.

Lo and behold, my phone rang at about 1 PM. WOW. That's service! I wanted to ask him specific questions about potential doctors he might know, but our conversation moved into other territory.

He strongly felt that primary care doctors are not the people we should be seeing. He feels, from a medical perspective, that we need the care of neurologists, sleep docs, psychiatrists - people who understand the multiple issues we face, understand how difficult our treatment can be, that moderate to severe RLS is chronic and will need attention for years to come.

That said, he didn't know any to refer us Chicagoans to.

He was very clear that to him, there are basically two type of RLS - the milder form that about 70% of all people with RLS have and who need no treatment, and the rest of us. Those who are here who have multiple conditions, who are battered by this, who cannot function in the world.

It was a treat to talk to someone who was so empathetic to what we go through. He is a gem. Since he is primarily a researcher and secondarily treats children with sleep and other disorders (he treats ADHS, Tourettes, etc.), he sees very few adults. I applaud his efforts and wouldn't want to deter him from research....I just wish he had a twin focused on adult treatment.

Per what he said, I came to a conclusion while listening to him. We tend to work with our PCs because they are the better listeners and they want to help us....they just do not know how. He said that the average doctor spends many hours each week just complying with administrative and legal nightmares and is too exhausted to learn about complex disorders such as RLS.

So, we want our PCs to treat us, when they are just not equipped to do it...and do it well. That is why we end up bringing in the research and they follow what we tell them.

But, that isn't good for any of us. Most importantly, we're affected by this and are by no means completely able to separate ourselves, try as we may. We have a bias coming in. Secondly, we can't see the big medical and pharma picture because we haven't had years of training. We may do well, but we could easily make a mistake.

We need quality trained doctors who specialize in moderate to severe RLS, doctors who do not suggest dopaminergics solve all problems or that quinine is an answer.

To me, this becomes the focus. How do we get those people? If we want them, we're going to have to do something about it. It's not going to just happen.