Need Support

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

I totally understand and agree with what you said Polar Bear!!
Am starting to get towards the end of my rope..although not quite there yet cos it's not 24/7 yet.
No I am not planning on it being...but hmm we shall see.

Totally don't understand why some doctors don't understand. It's okay to give addicts of different choices a facsimilie of their *choice* of drug...but allow others ? to suffer?? :(

Many doctors have their heads in the sand.

Polar Bear
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Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

Have you used the documents in the signature of myself, Viewsaskew and badnights - to print out and use as appropriate with attending an appointment with your doctor. Do you think he would be receptive,perhaps you have already tried this.
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

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

oh geez Polar Bear now I am confused?? Where do I find this? Sorry for my ignorance.
(but I had used many different approaches)
I as well gave him all the pamphlets etc and information re: WED/RLS

Polar Bear
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Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

If you look at my post above, in my signature at the bottom you will see a link in blue text. Click on this and it will take you to useful information.
Also look for the link in blue text in the signature area of Viewsaskew and badnights.
However, if you have already given your doctor information pamphlets perhaps you have already seen this information.

Also there is the book = Clinical Management of Restless Legs Syndrome - Second Edition, by Lee, Buchfuhrer, Allen and Hening.
My copy of this book is full of 'post-its' and pencil markings, ready to back me up when I am at a dr appointment.
The book is available from Amazon and cost around £20 UK.

For any of this information to be of benefit a doctor may be awesome, but also has to be willing to discuss, read, learn, and to work alongside the sufferer. :)
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

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

ahh Yes Polar Bear :) ty ty thank you!! I did actually go there...but did believe I was wrong. LOL
No worries.
Yes; I did give my doctor everything. I did not inundate him..but I gave him the information in pamphlet form as given to me from the foundation. I thought instead of printing all the pages off..he may be more impressed ( lol ) if it was in true pamphlet form. He said he would read it.
The next time I had to have the mirapex filled my doctor had been away studying for over 2 weeks. So I again got another doctor. This doc as well *Did not wish to give me another **Problem** Ahh well. As well I gave him the pamphlets. ( I keep at least one set of pamphlets on my person [purse] at all times ).
And you are correct..for all of this info to be of benefit... the doctor must be willing to discuss a segment of the pamphlet at each visit. One would think.
I understand they are busy...but I won't go up on the mirapex and go through all that again as I did with the ropinirole. I must say ...the mirapex works better for me. So far anyways.

Thank you Polar Bear:) All I can do is hope and Pray.
*My husband suggested if worse comes to worse I could visit Dr Buchfehrer if he's willing to take on a Canadian patient? Thanks again!!!

Polar Bear
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Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

A few of our members have indeed visited Dr B. I don't know how the system works in the US (I an in UK) but I would imagine that if you are paying as a private patient, it shouldn't matter where you are resident.

At present you need a doctor to listen and cooperate.
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

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

Polar Bear wrote:A few of our members have indeed visited Dr B. I don't know how the system works in the US (I an in UK) but I would imagine that if you are paying as a private patient, it shouldn't matter where you are resident.

At present you need a doctor to listen and cooperate.


I see him and pay cash. It was $300 US for my first appointment (this was a few years ago), and then I think I paid $100 for a follow-up a few years later.
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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Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

Wow.... those fees sound pretty good.

I paid more for a half hour with a neurologist who eventually agreed that I had WED and that I continue working with my GP !!
I paid cash because to wait to see him for 'free' using our health care system could take perhaps 2 years.
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

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

I would agree, Polar Bear - I was particularly surprised at the second visit rate. My local doc charges more, with fewer credentials or help! Of course, I also had an airline flight that cost around $250 (that was a bargain rate) and a rental car for another $100. I stayed with a friend, but if I'd had a hotel, I'd have added another $100 to $200 a day, depending on where I stayed and how long I stayed. So, definitely not inexpensive! But, I viewed it as a vacation and stayed with my friend for about 5 days. It was very lovely to be by the ocean.

When I compare it to local costs, my very insecure and cautious doc was making me visit EVERY month at the cost of $100 to $175 per visit (I had a large deductible, so had to pay for all my visits). So, I figured it actually cost less to see Dr B in the long run, and he trusted me and gave me what worked!
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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Thanks ALL!! for this feed back;)
So, could you please tell me if I just email Dr. B? and then set up the appt.??
Sorry I am so duh in this matter.
I live in BC Canada and I believe Dr. B's in California?
Thank you all for your help to date.
(oh btw I don't have to pay for medical here..only a small portion each month. That's one good thing I have great medical. And I don't mind paying at all for Dr. B. and all other costs. For me it's so worth it and you all understand this.)
I will *Try* and get a referral from my doc. One more thing..each time I ask my doc for the ferritin test and a referral to a neurologist>>he just doesn't think it's necessary<< I have told him HOW HORRIBLE this is.
To no avail. Am thinking he thinks..that the DA's are just doing their job.
Even the pharmacists who fill my Rx always tell me that I need to go up and up to get to my proper level ?? I gave them all the necessary pamphlets and still no one really hears me.
As well..the pharmacists tell me that I am one single *odd person* that they know who hasn't achieved all the benefits *YET* from the DA's. Hmmmm ?? They all disagree with anyother sort of Rx's. Sometimes it makes me feel like I am very odd. But I know from all the education from here and the information from this foundation that I am not odd at all. Am just another sufferer of WED/RLS.

Sincerely, OceanWalker

Polar Bear
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Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

No doubt you will soon hear the best way to go about making an appointment with Dr B.
And at least in BC you are on the correct side of North America :)

With regard to your ferritin levels - I would reckon that it would be a good idea if you had your levels checked before attending for any appointment with Dr B. Knowing your levels would be pretty important.

And as for being odd !! the DAs don't always work for everyone, or perhaps you are not on the correct dosage, some of us use a cocktail of medications. I use a DA and tramadol/codeine. I never ever had relief with a DA on its own.

Even if your doctor thinks a ferritin test is not necessary, have you shown him documentation that details the necessity of ferritin being up and around 100 before taking a medication such as a DA.... and said 'I want this test, I want to know what my ferritin level is".

With regard to a referral to a neurologist, it was a waste of my time and money. Dare I say.... I knew more about WED than him.
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

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

You can email him first, but he won't set up the appointment. Call his office and his admin staff will. You can email the admin staff, too. Not sure I remember their email....maybe buchfuhreroffice@gmail.com? His address and phone are: 11480 Brookshire Ave, Downey, CA 90241
(562) 904-1101. Downey is just to the south and east of Los Angeles.

He will want you to have a serum ferritin. You can email him first, tell him you've made and appt and that your doctor doesn't think it's necessary. You could ask him to send you something telling your doctor that you need this test. Then maybe your doctor will comply. Or, after you have the appt, he can call your doctor.

With me, he tries to work with my local doc as much as possible so that I do not have to continually go to CA. So, he will talk, via phone or email, to my doc here. He's worked with my primary care doc and with two different specialists I've seen.
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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Many Many Thanks Polar Bear and Ann (Viewsaskview) for this pertinent information.
I am going to see my doc (primary care giver) tomorrow am.
Sure hope he does comply.
And again Thank You so so much for everything!!

Been looking for hotels/motels/etc around the are.
Any suggestions?
I so appreciate all the help.
Just hoping and Praying this will all work out for me.
You are all so kind, caring and compassionate.

Polar Bear
Moderator
Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need Support

Post by Polar Bear »

Sounds like you are seriously considering an appointment with Dr B :)
Sorry I can't help with hotel advice - I always use Trip Advisor.
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

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

oceanwalker wrote:Many Many Thanks Polar Bear and Ann (Viewsaskview) for this pertinent information.
I am going to see my doc (primary care giver) tomorrow am.
Sure hope he does comply.
And again Thank You so so much for everything!!

Been looking for hotels/motels/etc around the are.
Any suggestions?
I so appreciate all the help.
Just hoping and Praying this will all work out for me.
You are all so kind, caring and compassionate.


If you show the info about needing to know serum ferritin - as shown in the WED Foundation's brochure - your primary should comply. I hope!

Per the area, I honestly do not know. I always stay with family or friends. I'm lucky to have both who live about an hour away from his office. The area his office is in isn't a "fun" area. Lots of businesses and residential areas. I've driven around a bit. If you don't mind a drive, I'd stay close to the ocean and drive to the appointment - but that shows my priorities! Seal Beach and Long Beach have fun downtown areas. Not sure about hotels close to them, but I'd look that up. It's about a 30 minute drive from there to his office if there isn't any traffic. Santa Monica is also very nice - not sure how much more it would cost to stay at any of these places vs a modest motel/hotel near his office. If you have a few extra dollars to spend, it might be a nice little vacation.
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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