Specialist to see?

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Audreylovescolor
Posts: 4
Joined: Tue Oct 16, 2018 2:41 am

Specialist to see?

Postby Audreylovescolor » Tue Oct 16, 2018 3:57 am

Hi I'm new to this site.. Everything I'm reading is Exactly me. RLS can make you crazy ar night.. What kind of specialist should I see??

Yankiwi
Posts: 386
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Another RLS sufferer

Postby Yankiwi » Tue Oct 16, 2018 4:06 am

It's nice to see some new voices on the discussion board. If you have RLS this is the place to be for advice and commiseration.

Polar Bear
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Location: N. Ireland

Re: Specialist to see?

Postby Polar Bear » Tue Oct 16, 2018 11:19 am

Welcome to the Discussion Board.
Who you would see is sometimes dictated by where you live and what specialists are near you. Or how far you are prepared to travel.
For example, I work with my GP who is willing to look at and consider information found on the RLS Foundation Home Page.

If you are fortunate enough to live within travelling distance of one of the RLS Quality Care Centres then that is definitely where you will find understanding and up to date care and treatment. Indeed some of our members have been known to take a short flight to get to one of the Centres. Appointments can have a bit of a wait. The Centres can be found using this link.
https://www.rls.org/treatment/quality-care-centers

If you were tell us of the general area where you live it's possible a member may know of someone more convenient to you.
Often a good Specialist is good because of his interests and enthusiasm to help rather that a specific title.
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

Rustsmith
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Location: Pueblo, Colorado

Re: Specialist to see?

Postby Rustsmith » Tue Oct 16, 2018 1:06 pm

The specialties that are often the most knowledgeable or RLS are the neurologists who specialize in either sleep medicine or movement disorders. This means that you cannot simply look for a neurologist. There are about eight of them in my town and none of them knows anything about RLS. In addition to the Quality Care Centers, another option is to check on the neurology department at a major medical school. They will often have a doctor who fits into one of the two specialties mentioned above. That is what I ended up having to do, but it involves a 2 hr drive each way just to see her occasionally.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

badnights
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Location: Northwest Territories, Canada

Re: Specialist to see?

Postby badnights » Wed Oct 17, 2018 4:55 am

There's really no hard and fast rule about the type of specialist. Some GPs have more experience trreating RLS/WED than some movement disorder specialists! But generally there are three types of specialist who end up becoming proficient in WED/RLS treatment - neurologists, pulmonary specialists and psychiatrists who have become interested in sleep issues. Once these doctors choose to specialize in sleep medicine, they have a greater chance of encountering and learning about WED/RLS. Movement-disorder neurologists can learn about it without specializing in sleep. So, basically, movement-disorder neuros or sleep specialists.

But unfortunately, just because someone specailizes in these things doesn't mean he/she knows anything about WED/RLS. In fact, even if they advertise themselves as knowledgeable about it, they might still not know en0ugh to treat it properly. It can be a tricky disease.

If your physician does not know what augmentation is, he is not ready to treat RLS/WED.

Your best bet, of course, is to get to a QCC as Betty has described. Barring that, ask your GP who you should see about it (you don't have to follow the advice). And start calling around. You'll find you have to be proactive with this disease, so it's a good thing you want to learn more.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Audreylovescolor
Posts: 4
Joined: Tue Oct 16, 2018 2:41 am

Re: Specialist to see?

Postby Audreylovescolor » Mon Oct 22, 2018 4:26 am

I live in Lima, Ohio. I have been suffering for along time. But, It has definitely gotten worse.. every single night they hurt so bad! It is always 15 min after i lie down.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specialist to see?

Postby badnights » Wed Oct 24, 2018 6:18 am

The Johns Hopkins clinic in Baltimore, or the Vanderbilt University medical center in Nashville are the closest QCCs to you, both about 400-500 miles away from you. https://www.rls.org/treatment/quality-care-centers
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Yankiwi
Posts: 386
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Specialist to see?

Postby Yankiwi » Wed Oct 24, 2018 10:29 pm

Audrey, it's such a bummer to think it is safe to go to bed then wham, the legs start up!

Audreylovescolor
Posts: 4
Joined: Tue Oct 16, 2018 2:41 am

Re: Specialist to see?

Postby Audreylovescolor » Sat Oct 27, 2018 11:15 pm

My sister and I have same problem.. we are going to go to our Family physician and see about getting on Mirapex. I'm on Lyrica 150 mg at night. But, I'm still in so much pain and my leg just dint stop. My feet get ice cold with in 15 min.

Audreylovescolor
Posts: 4
Joined: Tue Oct 16, 2018 2:41 am

Re: Specialist to see?

Postby Audreylovescolor » Sat Oct 27, 2018 11:15 pm

I'm not a member of RLS. Are most of you? And should I join?

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Specialist to see?

Postby Rustsmith » Sat Oct 27, 2018 11:49 pm

I'm not a member of RLS. Are most of you? And should I join?


We certainly encourage people to become members of the Foundation. The cost is minimal and if even that amount is too much, you can call the office and ask for a "scholarship". Becoming a member opens up access to a number of documents that are not available to non-members. Some of these documents are on topics that you might even want to share with your doctor.

Membership also provides you with a copy of their quarterly newsletter, Nightwalkers, which always has articles of interest.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Location: Los Angeles

Re: Specialist to see?

Postby ViewsAskew » Tue Oct 30, 2018 12:04 am

Audreylovescolor wrote:I'm not a member of RLS. Are most of you? And should I join?


I am for one reasons - no one else is trying to help us. THEY ARE! If a few dollars from me can combine with a few dollars from you and others, we can actually be part of the solution.
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.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Specialist to see?

Postby Polar Bear » Tue Oct 30, 2018 7:38 pm

I am also a member having discovered the Foundation site in the middle of one night when I was desperate. That was 12 years ago.

They provide this Discussion Board. There is also the main Foundation Web Site where there lots of documents of relevance. We need to help keep them so that they can help sufferers like us. And a biggie..... they fund research.
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

badnights
Moderator
Posts: 5289
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specialist to see?

Postby badnights » Thu Nov 01, 2018 4:46 am

y sister and I have same problem.. we are going to go to our Family physician and see about getting on Mirapex. I'm on Lyrica 150 mg at night. But, I'm still in so much pain and my leg just dint stop. My feet get ice cold with in 15 min.
You have to be very careful if your GP isn't familiar with WED/RLS. Most aren't. They know enough to put you on Mirapex but not enough to get you off it. Your GP might be an exception, since s/he started you on Lyrica not Mirapex. Mirapex can cause more problems than it's worth.

It would be good to do some reading about augmentation, if you haven;t already. Augmentation is worse than anything you're experiencing right now. (Pretty much by definition). It is a worsening of the WED/RLS that is caused by the very medication that is supposed to help. At first it helps, but then symptoms come earlier in the day and spread to the arms and increase in intensity. To make matters worse, stopping from the medication that caused the augmentation causes even WORSE symptoms - for a period of time. The medications that cause augmentation are Mirapex/pramipexole, Requip/ropinirole, Neupro/rotigotine, and worst of all, Sinemet/levo-carbidopa. These are all dopamine-type meds.

Most doctors don't know about augmentation, because it's sort of unique to WED/RLS. So they will prescribe a higher dose, which makes the augmentation worse, so they prescribe even more, and so on,but before long, nothing can cover the symptoms.

The most important thing for you and your sister is to get your ferritin levels checked. Taking oral iron might improve your symptoms. The specialists recommend that if your ferritin is below 100 (or at the very least, 75), you should supplement with oral iron (as long as your doctor says it's safe) until your ferritin is over 100. People without WED/RLS can get away with having ferritin levels as low as 20, but not us. For us, ferritin below 100 means symptoms are more severe, AND it means we are way more likely to augment on Mirapex.

So, get your ferritin up there so that (1) your symptoms will improve (maybe even go away), and (2) you won't augment if you take Mirapex, or you'll take longer to augment.

There are also other medication options you can think of. What about raising your Lyrica dose? If you do take Mirapex, you could take it in addition to Lyrica, and take the smallest amount possible. Then there is the Neupro patch. Neupro is still a dopamine med, but because its longer-acting, some specialists think augmentation is less of a concern - but personally I would advise as much caution as with Mirapex, cut the patches to reduce the dose and keep taking the Lyrica so you don't need as much Neupro. Anyway, these are some options you can discuss with your doctor. Best thing would be to get to a QCC.

Since you asked about being a member, I will point out that the scary lack of understanding among health-care professionals is one of the things the Foundation is trying to correct, and since they don't take money from Big Pharma for these efforts, they depend on donations. But I also like being a member to get access to the brochures and handouts - these are good to read or give to your doctor.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jams321
Posts: 1
Joined: Sat Dec 15, 2018 3:04 pm

Re: Specialist to see?

Postby jams321 » Sat Dec 15, 2018 3:46 pm

Does anyone know Specialists in Toronto Canada?


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