Getting Madder by the Minute

For everything and anything else not covered in the other WED/RLS sections.

Getting Madder by the Minute

Postby ViewsAskew » Wed Feb 13, 2013 9:35 pm

The more I think about the fact that I have to go 2000 miles from my home to get to a doctor who will treat me using accepted protocols for WED treatment....well, steam coming out of my ears is a bit close.

Don't get me wrong - I'm thrilled that I have a place to go - and a doctor I know who will do all he can to help me.

But, why? I mean, there are over 8 million people in the greater Chicago area. And not ONE of them is publishing on WED or, it appears, treating it according to standard protocols!

Clearly, I haven't contacted all doctors, but I've called, written, or visited over 50 doctors since 2005. In that time, only three of these agreed to use an opioid for symptoms...and all three eventually refused.

I know the Foundation has many things it's trying to do to help us and research is high on the list. But, I'm thinking that I'd really like to see concentrated doctor education. E-learning modules they can take for CEU credit. There could also be some sort of a WED Code of Ethics - Thou shalt not withhold any class of medication that helps, including strong opioids, for example - that doctors could sign and attest their agreement to follow the basic treatment guidelines.

Not sure how it would be promoted and what incentive the doctors have for using it, unless we, as a group, started asking for it.

The celiac community is incredibly organized and have made HUGE inroads in the last ten to fifteen years regarding doctor knowledge. Why can't we do that?
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.
ViewsAskew
Moderator
 
Posts: 11473
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Getting Madder by the Minute

Postby rthom » Wed Feb 13, 2013 9:53 pm

I absolutely agree ann, yesterday when I said you have a ray of hope--I was thinking the same about how rediculous it is that you need to go through it like this (and all of us, but not wanting to bring you down I tried for a positive response), but I was serious about us helping to try to get a training thing set up for the Dr,s if there is any way we can do it----I mentioned it a week ago or something but the only important thing is if anyone wants to try to get something going I'll do what I can here, there just has to be a way. If the celiac commnity can do it maybe we an take a few ointers from them? Contact oprah?, anything....
rthom
 
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Getting Madder by the Minute

Postby rthom » Wed Feb 13, 2013 9:54 pm

Maybe an email campaign to importan people? We all send emails the same couple of days?
rthom
 
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Getting Madder by the Minute

Postby EeFall » Thu Feb 14, 2013 5:26 am

It is a little like the blind leading the blind. Most of us who have severe RLS/WED have some very big hurdles to get through just to get from one day to the next, much less work towards implementing something that will help get the word out about RLS/WED. Those with mild to moderate symptoms don't need medications like methadone and other narcotics, they are already being taken care of, so no problem.

I know, I'll be a spokesperson for WED! That would go over great (sarcastic). I'm ticked off at the world and almost everyone around me most of the time because I never get a good nights sleep. I am so medicated that a junkie probably looks in better health than I do, and they are probably a lot less fat than I am. Much of the time I probably am about as interesting to talk to as a lamppost, being drugged up and tired will do that. I may be able to land a bit part as a zombie though, but it won't help the cause of promoting WED much.

We are outside the bell curve. Just points on a graph that don't follow the norm, so they are eliminated, tossed out because there is something wrong with the data.

Sorry if I sound deranged, depressed, grumpy, skeptical, mean-spirited, and a malcontent but then again I'm just a helpless Willis-Ekbom Disease sufferer :mrgreen:

Please help the mean drugged up sleepy guys! :wtf:

Now that I am off my soapbox, I'd help as much as I could, I was just trying to point out that it would be difficult to get something like this accomplished for a normally healthy individual - and we are supposed to do it as good or better than them...If I was well I probably wouldn't have even posted this :roll:
|Insert clever saying here|
EeFall
 
Posts: 1006
Joined: Thu Jan 03, 2013 4:11 am

Re: Getting Madder by the Minute

Postby rthom » Thu Feb 14, 2013 5:41 am

I hear you, the only thing that may make it easier now is the internet---maybe something that didn't require us traveling. I used to public speak alot, once at a dr's confrence, now though we may not actually have to attend--confrence or something--even just a message from those in need of better answers. I do know they will not do/change what they don't know is a problem, (or the extent of it)

Hope you feel better soon
rthom
 
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Getting Madder by the Minute

Postby EeFall » Thu Feb 14, 2013 6:26 am

rthom wrote:I hear you, the only thing that may make it easier now is the internet---maybe something that didn't require us traveling. I used to public speak alot, once at a dr's confrence, now though we may not actually have to attend--confrence or something--even just a message from those in need of better answers. I do know they will not do/change what they don't know is a problem, (or the extent of it)

Hope you feel better soon


Yes, the Internet does make it easier for sure. Travelling hadn't even occurred to me, of course that would be a big problem although I would be able to get to anyplace within North America by car.

The problem with me and WED is that there are many things I could do to help get the word out about WED but is the lack of will to do so. I have to work - it is my number one priority. Without a job I would lose everything so do my job the best I can but it takes all my strength to do it.

It is not like me, it is just because of WED. Normally I would be home doing things, or taking my wife out for the evening, or going places, planning things for the weekend, vacations. I used to do a lot of creative things, it has all more or less ended - I'm just too tired and drugged up to want to do it.

Even watching a movie takes, for me at least, the ability to feel good in the first place to even watch it. I have people say to me let's go watch a movie you will feel better. No, it is the other way around, it is I feel good I think I will go watch a movie.
|Insert clever saying here|
EeFall
 
Posts: 1006
Joined: Thu Jan 03, 2013 4:11 am

Re: Getting Madder by the Minute

Postby rthom » Thu Feb 14, 2013 7:00 am

I hear you, i used to be completely unable to function as well, couldn't figure out which was worse the physical crap from the WED or the mental crap from the pile of drugs to control it.
rthom
 
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Getting Madder by the Minute

Postby jakesmom » Fri Feb 22, 2013 1:37 pm

If you decide to do a mass email day, let me know. I will email till my fingers fall off. I am feeling a little less hopeful regarding finding a doctor. I mean seriously. If you are in Chicago and have to travel, imagine being in a small town in Arkansas and having the same problem with unknowledgeable or unwilling doctors. The first day I went to my neuro she said she had no problem giving opiates if needed. I am clearly augmenting and can justify my assertions with a clinical study and instead of a drug holiday I get a higher dose of Mirapex and tramadol.
This is so frustrating.
I need my job as well and it gets harder to focus with every medication change and the resulting side affects. And, due to sleep deprivation I can't drive more than 15 miles for fear of dozing off. Since when did WED sufferers become a second class of citizens who don't deserve to have quality of life !!!! Don't we suffer enough with the disease without having to give up movie theaters, trips that require us to sit confined, restaurants where you can't stetch your legs without kicking someone, curling up on the couch with a good book or crochet project. I could go on with this list and I know everyone could add to it. Grrrrrrrr
jakesmom
 
Posts: 342
Joined: Sat Feb 09, 2013 11:01 am

Re: Getting Madder by the Minute

Postby ViewsAskew » Sat Feb 23, 2013 1:14 am

When I saw Dr B yesterday, he was late for the appt - I was the first appt after lunch. He said he was giving a lunchtime talk about RLS/WED. We talked about the problem and I mentioned web based courses that allow credits for the doctors (nurses, etcl.). he said they were very hard to get approved.

he also said he's working with student neurologists at Stanford. Several each year. They head out all over the country. One just went to Kansas. So, that is reassuring, too.

The first thing we need to do is identify why are we doing it/ what outcome do we want?

That would drive what we do. We might have more than one outcome. While, ultimately, i want doctors who know how to treat WED, before we get there we might need something a bit more simple.
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.
ViewsAskew
Moderator
 
Posts: 11473
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Getting Madder by the Minute

Postby debbluebird » Sat Feb 23, 2013 6:09 am

I would like doctors to listen to what we are saying. We are very intune with our bodies. In addition to that, no one body is like another, in regards to treatment options.
debbluebird
 
Posts: 914
Joined: Mon May 21, 2012 3:27 pm

Re: Getting Madder by the Minute

Postby Neco » Tue Feb 26, 2013 9:17 pm

Maybe its time those of us with the energy/drive to do something, started getting more pro-active with the Media and local Medical Associations / State Medical boards?
User avatar
Neco
 
Posts: 2234
Joined: Tue Oct 04, 2005 10:18 am
Location: Waterloo, Wisconsin USA

Re: Getting Madder by the Minute

Postby ViewsAskew » Wed Feb 27, 2013 1:03 am

What are you thinking, Zach?
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.
ViewsAskew
Moderator
 
Posts: 11473
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Getting Madder by the Minute

Postby badnights » Wed Feb 27, 2013 7:37 am

The Foundation announced a few years ago that they were trying to establish Centers of Excellence for RLS treatment or research, I forget which, maybe both. This is the sort of thing that they should focus on first, some type of certification so that doctors have basic knowledge about how to treat RLS. One could learn the basics in a few hours, one would think. I wonder why the CE courses are so hard to get certified? whatever happened with that Centers of Excellence initiative - died from lack of staff?

Should we touch base with someone there who might be able to dig up whatever thoughts were recorded when the idea was still alive? And get them interested again and devote some time and energy to it? hahahhaahhahaha
sorry
I really want to, though. Zach could?? Maybe among us, there would collectively be enough desire and energy. My big desire when I wanted to make a video during the glutamate study was to educate physicians. I am willing to convert video-making energy to something else... you're thinking along the right lines, I suppose. I was thinking more informal. Interviews with Dr B, with Early at the Johns Hopkins, interviews with patients, clips of patients in agony, etc. But results might come faster from a formal certification, which would garner respect,

I am good bye for zopiclone now. :earning my lesson.
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board moderator's posts do not represent the opinion of the WED Foundation & are not medical advice.
badnights
Moderator
 
Posts: 2986
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Getting Madder by the Minute

Postby ViewsAskew » Thu Feb 28, 2013 3:20 am

One of our members, rubyslippers, works hard for the Foundation and she would know. I'm working with her on something else. I'll ask her.
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.
ViewsAskew
Moderator
 
Posts: 11473
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Getting Madder by the Minute

Postby debbluebird » Thu Feb 28, 2013 9:15 am

I am willing to do anything to help.
debbluebird
 
Posts: 914
Joined: Mon May 21, 2012 3:27 pm

Next

Return to General Topics: WED/RLS

Who is online

Users browsing this forum: No registered users and 1 guest