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Dysautonomia Conference 2020


cmep37

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For anyone who couldn't attend due to the time difference, who lacked the time or energy to sit through the lectures or who wants to have an idea of what the speakers are going to discuss before downloading the lecture at a later date, I found this website which provides a really useful summary of most of the main speakers :

https://dropitlikeitspots.com/dysautonomia-international-conference-2020-day-1-and-2/

https://dropitlikeitspots.com/dysautonomia-international-conference-2020-day-3-notes/

https://dropitlikeitspots.com/dysautonomia-international-conference-2020-day-4-notes/

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I watched several of the sessions and they were very interesting. What excited me the most is that Dr Grubb eluded that earlier this year they were getting close to some new findings linking auto-inflammation ( vs auto-immune ) to dysautonomia, but due to COVID all studies and research had to stop. As soon as studies can restart he sounded hopeful that new information will come out. Sooooo awesome!!!! I love it when that happens 😀!

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I've been watching these at a pace of about 2 per week and a lot of them more than once. Just fnished Dr Pace's talk on neuro-gastro issues in dysautonomia. It was fantastic, as most of them have been. There are a lot of questions I'm going to be be bringing to both my neuro and gastro stemming from this. She even talks about being able to discover mast cell activity from past endoscopies (if I understood it right). 

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Just watched Dr Goodman's presentation on POTS workup and it was so good that I printed out half the slides and plan on showing them to my neuro next visit. 

It was so good, I went back and watched his 2019 presentation concerning Sjogren's and Dysautonomia. 

For those of us with autoimmune components or suspected AI, he really gets it. 

After listening to him, I feel greatly encouraged that there are people that understand the what I'm going through. I just have to figure out how to get in front of them. At the very least, I have more information (even overwhelmingly more) for my doctors going forward. 

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@MTRJ75 - I am glad you found encouragement from the presentation. I know exactly what a relief it is when you finally find someone who understands all of your strange symptoms. When I finally found a specialist who knew why I got all these strange symptoms I felt like I was finally  "real" -  all those years the cardiologists and neurologists scratched their heads and came up with all kind of reasons why I could not have the symptoms I suffered from, because they could not explain them. No doubt the docs that treat you should be very interested in the info. 

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I don't see why they wouldn't share if you e-mailed them. It was free after all and they eventually end up sharing most the videos on Vimeo most years anyway. You can see Dr. Goodman's 2019 lecture on Sjogren's + Dysautonomia with a simple google search (though I'm having some trouble posting here).

 

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35 minutes ago, MTRJ75 said:

I don't see why they wouldn't share if you e-mailed them. It was free after all and they eventually end up sharing most the videos on Vimeo most years anyway. You can see Dr. Goodman's 2019 lecture on Sjogren's + Dysautonomia with a simple google search (though I'm having some trouble posting here).

 

Thank you!

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On 3/4/2021 at 8:39 PM, Pistol said:

@MTRJ75 - I am glad you found encouragement from the presentation. I know exactly what a relief it is when you finally find someone who understands all of your strange symptoms. When I finally found a specialist who knew why I got all these strange symptoms I felt like I was finally  "real" -  all those years the cardiologists and neurologists scratched their heads and came up with all kind of reasons why I could not have the symptoms I suffered from, because they could not explain them. No doubt the docs that treat you should be very interested in the info. 

The encouragement that there are answers out there is one thing that keeps me going. The frustration of finding doctors who will listen keeps it a struggle. 

One thing I've noticed about some of the best presentations so far are that these "specialists" are multi-system oriented. 

Dr Pace is a neurogastrologist. 

Dr Goodman is a neurologist who commonly deals with autoimmune conditions and says he rarely even refers to rheumatologists anymore, if ever. 

This is certainly what dysautonomia sufferers. need, these multi-faceted specialists. Unfortunately, I don't have access to any of these doctor types. 

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On 10/20/2020 at 8:58 PM, Pistol said:

I watched several of the sessions and they were very interesting. What excited me the most is that Dr Grubb eluded that earlier this year they were getting close to some new findings linking auto-inflammation ( vs auto-immune ) to dysautonomia, but due to COVID all studies and research had to stop. As soon as studies can restart he sounded hopeful that new information will come out. Sooooo awesome!!!! I love it when that happens 😀!

This is good to hear. I'm happy I have an appt with Beverly Karabin coming up. Otherwise I have no doctor interested in helping in any way. I do have an MRI of the brain next week. 

I will have to look up "auto inflammation" b/c I'm not sure what that is; I don't have auto immunity, assuming, because prednisone and immunosuppressants make me violently ill and sick and lead to infections. The type of chronic cancer I have results in the bone marrow constantly spitting out cytokines, especially the pro inflammatory kind so that is definitely an issue, have had them tested as well. 

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@CallieAndToby22 - there are two different types of immune systems: the one that responds to antigenes ( when it is attacking normal cells it is called auto-immunity ) and the one that is always active - the innate immune system. It consists of blood cells etc. When it is overly active it is called auto-inflammation. Here is an article that describes the innate IS:  WHAT IS INNATE IMMUNITY? | Center for Innate Immunity and Immune Disease (washington.edu)

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On 3/7/2021 at 6:26 AM, Pistol said:

@CallieAndToby22 - there are two different types of immune systems: the one that responds to antigenes ( when it is attacking normal cells it is called auto-immunity ) and the one that is always active - the innate immune system. It consists of blood cells etc. When it is overly active it is called auto-inflammation. Here is an article that describes the innate IS:  WHAT IS INNATE IMMUNITY? | Center for Innate Immunity and Immune Disease (washington.edu)

That is super interesting. I've only heard of auto-immunity. Thanks. 

 

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I've watched the exercise presentation twice, downloaded the CHOP exercise program from the link provided, read the entire thing, got to the actual workout calendar...and have no idea what they're talking about where it says "3 min Base Pace". I'm hoping this is mostly stuff I can do at home and don't need a gym or therapy center for. 

Two of the more interesting things from the lecture: 

How constant slouching can cause vision issues (which I mentioned in another thread)

The therapist basically said that it's impossible to succeed with an exercise program if mast cell issues aren't under control. 

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