RLS Patient Symposium

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

Postby Rustsmith » Mon Oct 01, 2018 2:53 pm

I had the opportunity to attend the RLS Patient Symposium in San Diego over the weekend. Many of the RLS experts were there to make presentations. There was far too much to be able to cover it all here. But here are a couple of highlights that I picked up. Perhaps others who were there can add their comments:
1. There are only a couple of new drugs that are in the pipeline. One is to treat augmentation and another is a different type of dopamine agonist. So the real hope at this point is that something comes out of the adenosine research.
2. There will probably be an adenosine clinical trial announced here in the US very soon.
3. Dr.s Allen and Early talked about IV Iron and the consensus guidelines for giving them. All of the experts agreed that IV iron can be given at higher ferritin levels than the guidelines. The issue was that some of the European members of the consensus committee wanted even lower numbers, so they had to compromise. Dr Early said that the biggest hurdle at this point is finding a hematologist who will do the infusion. He placed the chances of finding one at about 15%. The issue is that they are only interested in anemia.
4. All of the experts continually repeated that treatments must be handled on a case-by-case basis. That there is no cookbook method for treating RLS. Issues with side effects and other health problems continually create exceptions to every "rule" for selecting medications.
5. It was pretty obvious to me that the doctors are not familiar with non-medication things that all of us face. I think that they were somewhat surprised by the show of hands when the audience was asked about hot baths. They were obviously out of the loop when the discussion about non-medication driven suicide came up. The use of marijuana was also something that only the Pharmacy doctor from Colorado knew very much about.
6. It was really great to meet so many other people with RLS and to hear about the experience of others. There was lots that we have in common, but also many differences.
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.

Polar Bear
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Re: RLS Patient Symposium

Postby Polar Bear » Tue Oct 02, 2018 1:00 pm

It is very interesting to see your No. 5.
And to note that perhaps the experts, to whom we are so grateful, have perhaps been given some food for thought.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Oozz
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Re: RLS Patient Symposium

Postby Oozz » Wed Oct 03, 2018 3:22 pm

Thank you for posting this.

badnights
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Re: RLS Patient Symposium

Postby badnights » Wed Oct 03, 2018 11:16 pm

I would add a 6th point, one that concerned me. When asked about the use of kratom, all of the experts were either silent or negative, and the negativity arose I think from ignorance - not one of them had anything to say about it except negative murmurs.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
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

badnights
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Re: RLS Patient Symposium

Postby badnights » Wed Oct 03, 2018 11:20 pm

Ah, I see from the other thread that Ann has elected me to look over my notes and report back! I will do so in the next day or two.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
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: RLS Patient Symposium

Postby ViewsAskew » Thu Oct 04, 2018 5:48 am

badnights wrote:Ah, I see from the other thread that Ann has elected me to look over my notes and report back! I will do so in the next day or two.


Sorry! I just knew you had them...and I didn't, lol. Seemed the only option :-).
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.

2BassetMom
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Re: RLS Patient Symposium

Postby 2BassetMom » Thu Oct 04, 2018 8:38 pm

I was at the symposium also and had my daughter take notes. As soon as she types them up I'll be able to add to this conversation. One item I found disturbing also is #5. I was surprised that these experts didn't have much input on the suicide issue. If they could read the stories on this forum and on the Facebook page they would sense the desperation of people who have not succeeded in getting on any effective medication. I hope they will at least look into this topic as one of importance.
One of the highlights of the symposium was meeting people I only knew by their use names. That was special.

ViewsAskew
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Re: RLS Patient Symposium

Postby ViewsAskew » Thu Oct 04, 2018 8:51 pm

2BassetMom wrote:I was at the symposium also and had my daughter take notes. As soon as she types them up I'll be able to add to this conversation. One item I found disturbing also is #5. I was surprised that these experts didn't have much input on the suicide issue. If they could read the stories on this forum and on the Facebook page they would sense the desperation of people who have not succeeded in getting on any effective medication. I hope they will at least look into this topic as one of importance.
One of the highlights of the symposium was meeting people I only knew by their use names. That was special.


I have often said that if only the researchers would read the posts here, they'd get a whole 'nother perspective. I also think they'd be surprised by what lengths we go to - hoarding medications, trying crazy things, and potentially doing things that could cause harm, all because we are so desperate.

It was so nice the moment we were in conversation at that table and realized who each other was. I am smiling thinking about it. So glad you and your daughter could make it - she must be a special person to come with you and take notes!
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.

2BassetMom
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Re: RLS Patient Symposium

Postby 2BassetMom » Thu Oct 04, 2018 9:04 pm

Ann, My daughter along with my husband make it possible for me to lead an active life. She is very special indeed!

Rustsmith
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Re: RLS Patient Symposium

Postby Rustsmith » Thu Oct 04, 2018 10:54 pm

The rest of you have convinced me that I need to bring the suicide issue up with I speak with Karla next.

I have already contacted her about trying to present a white paper to the Medical Board to correct something that each of them said about oral iron and vitamin C. Every one of them said that the role of the vitamin C is to maintain acidity. That is just plain wrong. If that was the case, why don't they tell us to take it with a Coke, which is about 100 times more acidic. I explained to Karla that this field of chemistry is my area of expertise and it is similar to me telling them that dopamine agonists are addicting. Semantics, yes, but it is technical semantics and they are continuing to circulate information that is simply not correct.
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: RLS Patient Symposium

Postby ViewsAskew » Fri Oct 05, 2018 12:19 am

2BassetMom wrote:Ann, My daughter along with my husband make it possible for me to lead an active life. She is very special indeed!


:D
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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Re: RLS Patient Symposium

Postby ViewsAskew » Fri Oct 05, 2018 12:22 am

Did anyone download the files? I tried today and failed. The download link isn't active, sadly. I shared with my google drive...and failed again (they converted the PPTs to txt files). I didn't have the energy to download from drive to see if I could rename and get them to work.
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: RLS Patient Symposium

Postby Rustsmith » Fri Oct 05, 2018 2:26 am

Yes, I got all of them (except for Dr Conner's which sadly was not posted since I wanted that one the most). Most were quite large and I had to type the extended file name of each one into the navigation bar of my computer's browser to get them. Needless to say, that took quite a while.
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: RLS Patient Symposium

Postby ViewsAskew » Fri Oct 05, 2018 2:53 am

Just after I posted, I received a link from Zibby that I could open in my PC - I had painstakingly typed the URL for Box...and likely had an error. I was not up to finding it at the time. With the link I didn't have to try again! YAY, Zibby!
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.

sleepdancer2
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Re: RLS Patient Symposium

Postby sleepdancer2 » Fri Oct 05, 2018 3:43 am

Thank you to all who have reported back. That whole day I felt restless (no pun intended lol) and regretful that I did not summon the energy to make it happen for myself. Would have loved to meet those who attended. This forum has been my only source of solace with those who truly understand what I've been through. What I learned here about augmentation changed my life. I am much better now but the long years of utter misery remain vivid in my mind. I do hope patients continue efforts to bring the medical community to a better understanding of the real-life struggle of living with RLS/PLMD. Today I was noticing a young lady I follow on Twitter (Julie Flygare) who a few years ago spoke out about the medical community's lack of understanding of life with narcolepsy. Her patient advocacy grew into a book and now even a career traveling worldwide speaking to every symposium and panel that will listen. We each contribute to RLS awareness when we talk with our doctors, and that feels kinda good.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c


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