Mast Cell Matters: Deep dives on MCAS with Tania Dempsey, MD - Presented by The POTScast

We have the entire medical/production team of 5 physician/researchers to give us an update and behind-the-scenes look at the documentary they are making about the trifecta of MCAS, dysautonomia/POTS, and hypermobility spectrum disorders.  We hear from doctors Tania Dempsey, Larry Afrin, Linda Bluestein, Lawrence Kinsella and Leonard Weinstock, along with patient Jill Brook, to hear how filming is going so far and how we can all help support the film.  This is a crossover episode with Bendy Bodies with Hypermobility MD, Dr. Linda Bluestein and The POTScast:  POTS Matters.  You can learn more about the documentary at MCASfund.org. Chapters 00:00 Introduction 00:37 Creating Awareness and Increasing Treatment Options 03:09 The Birth of the Documentary Project 05:20 Filming in New York 07:19 Filming in St. Louis 10:32 The Motivation to Work with Complex Patients 15:49 The Journey of Recognizing MCAS 17:34 The Impact of MCAS Treatment 21:00 Personal Experiences and Incorporating MCAS Treatment 22:42 The Need for an Educational Library 25:29 The Challenge of Condensing Information 26:21 Describing MCAS in Sound Bites 31:10 The Importance of Raising Awareness 34:42 Growth and Development Abnormalities in MCAS 40:03 Main Points about Hypermobility Syndromes and Dysautonomia 44:48 Partnership with LDN Research Trust 51:47 Final Words and Call for Support 54:26 Recognition and Treatment of Unrecognized Patients 55:44 Importance of Learning and Trying 56:13 Gratitude for Dedicated Doctors 56:47 Closing Remarks and Resources      You can learn more about the physicians in this episode at: https://www.drtaniadempsey.com/ for Dr. Tania Dempsey https://aimcenterpm.com/ for Dr. Tania Dempsey and Dr. Lawrence Afrin https://www.gidoctor.net/leonard-weinstock-md for Dr. Leonard Weinstock https://www.ssmhealth.com/find-a-doctor/doctor-details/laurence-j-kinsella-md for Dr. Laurence Kinsella https://www.hypermobilitymd.com/ for Dr. Linda Bluestein If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/ Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Dempsey interviews Dr. Eva Nagy, a world-renowned breast surgeon experienced in all sorts of breast surgeries, who has developed special interest and skill in treating breast implant illness (BII), which she believes can be related to mast cell activation syndrome (MCAS).  Dr. Nagy describes BII, how she removes problem implants, and the effects this can have on a wide range of symptoms. You can learn more about Dr. Nagy and her practice here. You can learn more about Dr. Dempsey and her practice here. If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/ Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Janet Settle, a forward-thinking psychiatrist, discusses the pivotal role of mast cell activation in mental health issues like anxiety and bipolar disorder type II. She emphasizes an integrated treatment approach that addresses both psychiatric symptoms and mast cell stability. The conversation explores the often-overlooked connection between histamine levels and brain function, plus the benefits of brain retraining and emotional regulation techniques for those experiencing MCAS. Settle advocates for a holistic understanding of mental health that includes trauma and personal health signals.

Dr. Linda Bluestein, an anesthesiologist and pain specialist, delves into hypermobility disorders and their connection to mast cell activation syndrome. She shares her unique insights stemming from her personal experiences with EDS. The discussion covers pain management strategies, including opioids and the promising effects of ketamine. Dr. Bluestein emphasizes the importance of individualized care and explores newer treatments like cannabinoids. Additionally, she highlights valuable resources for patients navigating hypermobility.

Dr. Weinstock and Dr. Dempsey are spearheading the creation of a documentary about MCAS, POTS, and EDS. Still in the planning stages, this documentary intends to educate medical professionals and the general public. We hope that it will help raise awareness! Link to the LDN Research Trust:https://ldnresearchtrust.org/mast-cell-activation-syndrome-documentary You can read the transcript for this episode here: https://tinyurl.com/potscast165 If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/ Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Treating MCAS, POTS, and Long COVID can be difficult, and physicians must attack from various angles to get patients feeling better. Dr. Maxwell walks us through his thinking and how MCAS is linked to POTS and Long COVID. This episode is a must-listen for patients and practitioners alike. You can read the transcript for this episode here: http://tinyurl.com/potscast159 If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/ Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Leonard Weinstock, a gastroenterologist and MCAS expert, delves into mast cell dynamics within the GI tract. He explains how high mast cell counts link to conditions like SIBO, IBS, and bloating. Weinstock shares insights on using low-dose naltrexone for treatment, highlighting its benefits and dosing complexities. Dietary strategies for MCAS management are discussed, including gluten-free and low FODMAP options. Furthermore, he explores the challenges of diagnosing IBS versus MCAS, emphasizing the importance of thorough medical education for better patient outcomes.

Dr. Afrin, a world expert in all things mast cell, talks in depth about issues with the first MCAS "consensus" statement and the need for a second MCAS consensus statement so that patients can be treated even if their lab tests don't show an elevation of tryptase levels. This opens the diagnostic door to many additional patients so that they can get the treatment that they need. You can read the transcript for this episode here: https://tinyurl.com/potscast129 Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you! If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org! Find out more about Standing Up to POTS! Check us out on our Website: www.standinguptopots.org Facebook: https://www.facebook.com/standinguptopots/ Instagram: https://www.instagram.com/standinguptopots/ Twitter: https://twitter.com/POTSActivist Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/ Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Dempsey dives into the complexities of diagnosing Mast Cell Activation Syndrome (MCAS), emphasizing its multi-system effects. She discusses the importance of addressing comorbidities like POTS. The podcast highlights various treatment options, including Montelukast and Zolair, while stressing the significance of personalized care. Real-life challenges such as long wait times and the intricacies of symptom management are explored, empowering patients with knowledge about their journeys in managing MCAS.

Delve into the fascinating world of mast cells and their role in the immune system. Learn how surgical materials can trigger mast cell activation syndrome and amplify reactions to the environment. The conversation highlights the symptoms of MCAS, particularly in women during hormonal shifts. Discover the link between dysfunctional mast cells and conditions like POTS, emphasizing the need for patient education. Explore the journey of understanding this often-misunderstood syndrome and the importance of advocacy in advancing treatment options.