Dad has had RLS for 50 years - can't find doctor who gets it

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mexigrl64
Posts: 2
Joined: Wed Jan 23, 2013 4:46 am

Dad has had RLS for 50 years - can't find doctor who gets it

Post by mexigrl64 »

Hi,

I searched on the RLS website but there was not one doctor showing for our entire area (gulf coast of MS) - I even tried New Orleans and nothing. That can't be can it?

My dad is one of the early RLS people. He is now 80 years old and is always struggling with sleep. He's starting to take all sorts of meds to knock himself out at night and that worries me because he has CHF (congestive heart failure).

How can we find a specialist? I would just love, for once, for him to see someone that understands the illness and can give recommendations. That would make a world of difference, even if they aren't cures!

I'd love any advice about how to find a specialist!

Thanks

Barri

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

Re: Dad has had RLS for 50 years - can't find doctor who get

Post by ViewsAskew »

Barri, I wish I had an easy answer for you. The closest experts to you are not very close - Houston is where Dr Ondo is and Atlanta is where Dr Rye is. I can't recall anyone citing a person in MS, Alabama, or Louisiana. And, I say experts because these are doctors who are truly at the top of the RLS treatment chain - they treat hundreds if not thousands of people.

The problem is that many doctors can say they treat RLS/WED, but they can only treat it if it's mild to moderate and there are no other issues. Any neurologist or sleep doctor is likely in the category. But, when it gets more complex, the ability to help decreases quickly. Other conditions, odd reactions to the medications, or problems with medications all are things they just do not know how to handle. And, they often make poor decisions - then people join our discussion board after a few years of the wrong treatment and are desperate for help.

The doctors listed on the Foundation's website are ones that the Foundation talked to and made sure they could handle most cases. That is why there are so few. In the past, they listed any doctor who said they wanted to treat it - but didn't require any proof that the doctor could. People complained quite a bit because they would see one of these doctors and the doctor really could only do the basic stuff - they were incompetent when anything more difficult occurred.

I've had a hard time finding a local doctor and I live in Chicago. I had some luck educating a willing GP about ten years ago. I bought the book CLinical Management of Restless Legs Syndrome and gave it to my GP. I wrote to Dr Buchfuhrer - somno@verizon.net - and asked for advice, which I also shared with the GP. And I printed one article from the Foundation (your have to be a member to see many of the articles) that was most appropriate. Between them, the doc became familiar enough that we were able to work together successfully for about 3-4 years. I moved and couldn't see him easily, otherwise I might still be seeing him. As it is, I wasn't successful at educating a new GP and couldn't find a neuro who really understood - I currently fly to California. But, that likely isn't an option for your dad!

Early on, I gathered a list of the neurologists, sleep doctors, and sleep centers around me. I then called all of them and asked some questions. I wanted to know:

1. How many RLS/WED patients did they have and if they treated any severe or difficult to treat cases. I didn't want to see a doctor who only had a handful of cases that were all mild.

2. Did they have experience prescribing all classes of drugs used for RLS (including opioids), not just dopamine agonists. And, related to that, had any of their patients had difficulty with the drugs so that they needed to prescribe many things to find a working solution. I wanted to see that they really were able to go beyond the commonly known solutions and would be able to help me in novel ways.

3. How would they work with me? For example, if something wasn't working, would I have to wait weeks or months to see them again or would they talk to me on the phone or through email.

Off the top of my head, because you are dealing with other problems and likely your dad takes other drugs, I wonder if a pychopharmacologist would be helpful. They are psychiatrists who specialize in how medications work with each other.
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.

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