Do I need to look for a sleep specialist?

[Bjorn]

My doctor isn't up on WED medications or side effects like augmentation. I'd like to get a referral to a neurologist in the Kaiser system here and there are several, but only one of them mentions RLS as a disease they treat. The doctor is a sleep specialist and I suppose it would make sense the doc would treat RLS, but a sleep specialist isn't the first thing I thought of when looking for a referral.

It sounds like a lot of you have neurologists to help with your symptoms. Are they also sleep specialists? Is there some other specialty I should be looking for?

Thanks
Bjorn

[Rustsmith]

These days, any physician can claim to be a sleep specialist and get in on the lucrative business of running sleep studies. However, usually sleep specialists either have a background in pulmonology or neurology. A sleep neurologist has a better chance of being able to diagnose and treat WED than a "generalist" neurologist. However, that does not mean that either group of doctors will necessarily be better than the other when it comes to the more complex issues associated with augmentation and alternatives to dopamine agonist drugs.

Since you are looking within the Kaiser system, you might also look for a doctor specializing in movement disorders. These specialists are usually neurologists who work with issues such as Parkinsons and WED.

For someone in your situation, our normal recommendation is that if you cannot find someone who has already seen that doctor for WED, then you could try calling and asking to speak with the nurses. If you can get through to them, they can often tell you whether the doctor regularly sees WED patients or not. But if that fails, the next course of action might be to just schedule an appointment and develop your own opinion.

[ViewsAskew]

I sure wish there was an easy way to figure it out or straight-forward answer.

Neurologists often are not up to date. Sometimes they are wonderful. And, other times they are arrogant and refuse to listen to anything up-to-date. I had one sleep doctor who knew nothing. I had another sleep doctor who didn't know much, but was willing to research what was most current. The worst doctor I've ever had was a neurologist. The best doctor I had, in many ways, was a GP.

If you had time and could read all the posts over the years that talk about experiences with doctors, you'd find a vast range from awful to excellent. And little consistency about how to find the excellent ones.

That's of regular doctors - ones who do not research or write about WED.

The best doctor I've seen is one of the RLS/WED heroes - Dr Buchfuhrer (who is a pulmonologist, by the way). But, those doctors are hard to find. You have to be in Texas, Minnesota, California, and a few other places to find one of them. There are some others - and some have been shared here and are listed in a thread about this. But, to just pick from your insurance plan is literally a crap shoot. You're left with the ideas Steve shared - call the nurses, see if there is a support group and you can find out what others in your area do, and so on.

[Bjorn]

Thank you. I really appreciate the info. I'll let you know how it goes.

Bjorn

[Polar Bear]

I live in the UK.
If I lived in the US and anywhere near Dr B in California or the John Hopkins, or Texas etc. I would have no hesitation in paying the consultation fee to see the real and experienced expert, who is known to be an expert, and whom we know from patients is an expert who understands and has patients who are willing to state that these doctors are good.

Their fee has to be paid and a patient has to make their way to the preferred destination. This isn't cheap.
But I did hear mention of a fee that one of these Drs had charged and was surprised in a good way at the cost.

IMHO too much time can be wasted trying to locate a neurologist - another doctor - another doctor/neurologist, and so on, within a particular insurance plan, who may or may not be of help. Even outside of any inurance plan, it can be debatable how much WED RLS success any doctor has without hearing it from their patients.

You could educate a GP if he is willing.
You could go to a known expert and then have your GP do the follow on - with the game plan of the expert for guidance.

I will never have this opportunity, but would grasp it with both hands.
I would save time and get treatment in the very near future.

[ViewsAskew]

I think you make an excellent point, Polar Bear. Think of the experience of one of our members. The doctor retired, a new doc took over. Another change. Soon, no one at the office would prescribe opioids, even though the dose had been stable and constant for years. Without insurance and a large savings account, the member tried to find another doctor. After all was said and done, the member owed more in failed doctor's visits than if the member would have traveled to see one of the experts. And, still didn't have a workable solution.

At the time I lost my doctor, I was having a lot of financial instability. I'd started a new business, we'd poured a lot of savings into it, we weren't yet earning anything. I really didn't have the money - and I had no insurance. This was pre-Obama-care. My flight, rental car, doctor's visit, etc was about $600 US, IIRC. I had been paying $150 visits MONTHLY to see my local doc who wasn't even able to help me! One visit to the specialist and I didn't have to go back for another year. We communicate by phone or email when things do not work. Saved me tremendously.

[Polar Bear]

Thank you Views,
It does mean an initial outlay but a much greater opportunity for benefit.

[Bjorn]

I called the Neurology department at Kaiser and asked if any of the staff neurologists specialized in WED. I was told that each of them specialized in a major disease (Parkinson's, MS, stroke etc) but that any of them could help me with WED.
I wasn't sure what to make of that. WED is so trivial that any doc would know how to treat it?

A few years ago I saw one of the neurologists for migraine headaches and also for WED. He gave me a RX for clonazepam which was totally useless and even dangerous. Prostate problems were causing me to go to the bathroom 3-4 times a night which isn't easy when you're loopy from the clonazepam.

So anyway, I guess I'll stay with my primary care doc although that's not going so great. I was just reading Polar Bear's post. I think I will consider a consultation with Dr B. ..

[ViewsAskew]

I called the Neurology department at Kaiser and asked if any of the staff neurologists specialized in WED. I was told that each of them specialized in a major disease (Parkinson's, MS, stroke etc) but that any of them could help me with WED.
I wasn't sure what to make of that. WED is so trivial that any doc would know how to treat it?

A few years ago I saw one of the neurologists for migraine headaches and also for WED. He gave me a RX for clonazepam which was totally useless and even dangerous. Prostate problems were causing me to go to the bathroom 3-4 times a night which isn't easy when you're loopy from the clonazepam.

So anyway, I guess I'll stay with my primary care doc although that's not going so great. I was just reading Polar Bear's post. I think I will consider a consultation with Dr B. ..

Indeed! Makes me angry just to think about it. Then I read about it and I get apoplectic!

[badnights]

Bjorn, it would not hurt to try one of the neurologists. There are very few in the world who specialize only in WED, so it's not a big deal that no one there does. It's hit or miss whether you get someone who can help you, but the odds aren't terrible. You had a bad experience last time, so maybe this time will be a good experience (just don't get the same one). If your relationship with your primary care doctor isn't getting you the help you need, it would seem you have nothing to lose.