idea - need help

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ViewsAskew
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idea - need help

Postby ViewsAskew » Sat Feb 11, 2017 12:13 pm

So, I often get requests through the PM system. People ask me for all kinds of things - likely they do the other moderators, too. And, we are happy to help - it's one of the reasons we are here.

In the past year or so, several times I or others have needed an arsenal to take to our doctors when they are resistant to something we know is true. For example, a few years ago my new pharmacy refused to fill the opioid script until I showed them medical research articles that proved opioids were useful and helped. Recently, my new neuro was terrified of infusions - she was operating with and old paradigm of them; I decided not to work with her, but before I did, I started to look for articles to send to her. Recently, someone was wondering on whether I had any links to research that would covered the safety of current iron infusions and that they really wouldn't send someone into toxic shock. I sent the 3 articles I had bookmarked, but they weren't perfect.

So, I was thinking...wouldn't it be great to have a list of topics that doctors tend to throw at us with a list of research that explains the better approach.

Infusions - the actual stats on safety, the new irons that are used,
Infusions - stats on how much they help
Opioids - why and when they can be appropriate
Carbidopa-levidopa - stats on augmentation and that it shouldn't be used daily anymore

And so on.

The catch is that some of us have to do the work and set up the posts with the info in it.

We could start with a list of likely "resistance" that we typically encounter. Then we could either look through research posted here or on medical journal sites. I don't have unfettered access, but I know some of us do.

Anyone interested?
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.

debbluebird
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Re: idea - need help

Postby debbluebird » Sun Feb 12, 2017 12:17 am

I think that would be helpful for new people, or just people who are having to find new doctors. Or people who have doctors who are resistant and uninformed. I have limited access, or I would help.

SLEEPY ANGEL
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Re: idea - need help

Postby SLEEPY ANGEL » Sun Feb 12, 2017 1:14 am

ViewsAskew-- I wish I were more knowledgeable and not at the stage where I'm still learning about all sorts of Meds and treatments. I can't help out but DO want to say it sounds like a good idea; and Debbluebird named the kinds of folks who would benefit a lot! Hope you get some to get onboard with setting things up.

badnights
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Re: idea - need help

Postby badnights » Sun Feb 12, 2017 7:30 am

I can contribute one on opioids - I will dig it out - I used it on my GP, who thought opioids merely made me forget about my symptoms (!!). It's a research paper that showed how opioids prevented iron-deficient brain cells from dying. (rat brain cells, in vitro)

I will take all I can get on iron infusions - she asked incredulously, when I raised the topic, "you want to do it even though it causes toxic shock?" So ya - anything I can get my hands on to enlighten her. I know she'll listen, she's good that way.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: idea - need help

Postby ViewsAskew » Sun Feb 12, 2017 7:44 am

I suppose one method, for now, could be to just get topics here, number then, then dump any related papers and associate a # with them. Then we could be compiling as we go, finishing when we put it all together.

I bet Steve and Holland have saved oodles of papers - I know I have a bunch bookmarked. The question is what is the topic and would it help someone with doctor resistance.
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
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Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Doctor Resistance Topics

Postby ViewsAskew » Sun Feb 12, 2017 7:50 am

Here are some I've heard:

Opioid can't help RLS
Just keep increasing the DA as symptoms worsen
Your ferritin is fine
Symptoms can't happen in other parts of the body
Symptoms can't happen during the day
RLS isn't painful
You won't have difficulty stopping that benzo
Sinemet (carbidopa-levadopa) is a great drug to take every day
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.

Rustsmith
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Re: idea - need help

Postby Rustsmith » Sun Feb 12, 2017 5:05 pm

Ann, you are correct that I collected a number of papers when I was getting started here. But they are not arranged in any particular order and most deal with the neurochemistry of RLS, the mechanism of how RLS works and of course augmentation since that hit me soon after I arrived here. Also, I have copies of these papers based upon the "personal use" exemption to the copyright laws and this would prevent anything more than a few quotes or a link to those papers that are publicly available.

So, I don't have very much on the sorts of topics that you have listed. However, finding things with Google Scholar and then using my university library access to check them out is certainly possible.
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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Re: idea - need help

Postby ViewsAskew » Mon Feb 13, 2017 12:46 am

Steve, I wasn't thinking we would want the actual paper - just the title, author, etc. As if we were writing an APA paper and providing references. Sure, giving the doctor the whole article(s) would be great, but it would be too difficult to keep all that - and we don't necessarily have access, as you pointed out.
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: 14539
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: idea - need help

Postby ViewsAskew » Mon Feb 13, 2017 5:44 am

Steve, I wasn't thinking we would want the actual paper - just the title, author, etc. As if we were writing an APA paper and providing references. Sure, giving the doctor the whole article(s) would be great, but it would be too difficult to keep all that - and we don't necessarily have access, as you pointed out.
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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