A Personal and Professional Perspective on MCAS | Office Hours (Ep 121)
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- Опубликовано: 2 янв 2025
- In this candid solo episode of the Bendy Bodies podcast, I share my insights into Mast Cell Activation Syndrome (MCAS) and its intricate connection to hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Reflecting on my personal and professional perspective and cases from my practice, I discuss how MCAS may play a pivotal role in chronic pain and offer practical strategies for identifying and managing symptoms. From my first introduction to MCAS to groundbreaking results in patient care, this episode dives deep into the science and solutions for improving quality of life with these interconnected conditions. Stick around for special hypermobility hacks and helpful resources!
Takeaways:
MCAS as a Root Cause: Mast cell activation syndrome (MCAS) may be the underlying driver behind many symptoms experienced by individuals with hypermobile EDS (hEDS) and POTS, emphasizing the need for targeted treatment.
A Spectrum of Symptoms: MCAS presents a wide variety of symptoms, from pain and fatigue to GI and neurological issues, making it essential to approach diagnosis and management comprehensively.
Therapies Can Be Life-Changing: Tailored treatments for MCAS, such as antihistamines and mast cell stabilizers, can yield dramatic improvements in quality of life when appropriately managed.
Patient Advocacy is Crucial: Self-advocacy and education are vital for navigating complex conditions like MCAS, hEDS, and POTS, especially when facing medical gaslighting or misdiagnosis.
Sharing Information is Empowering: Podcasts, newsletters, and community platforms are invaluable for disseminating complex medical topics like MCAS, helping patients and providers alike understand these intricate conditions.
Show Correction: I said “Mast cells respond to external stimuli but they actually respond to internal and external stimuli (hormones etc)
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Have you found a way to effectively communicate your symptoms to your doctor?
In my experience, even docs that understand the triad often don't fully understand EDS. I'm sure I don't help as I'm not great at explaining it so that one can comprehend it, at least in a general sense. For me, work on that is ongoing.
@@katherinetkillian3176 I also find that to be true. Each of these conditions is so complex on their own that it is hard to be up to speed on the others. Have you seen the episode about the nonprofit documentary on the triad I am making with a team of HCP? Each of us has slightly different expertise which helps!
As always, your podcasts are packed with great information and helpful tips! They are so packed with info that I often have to listen more than once to grasp some of the material presented. What an amazing gift you offer within these podcasts to the patients who have such maladies and doctors who treat them! Thank you so very much for the work you do!!
Thank you so much for the extremely kind comment. It means the world to me and keeps me going! Do you have a favorite episode or tip?
@@bendybodiespodcast I think my favorite episode is the one with with Dr Bolognese. That said, there's great info and action points in all of them!
@@katherinetkillian3176 I am so glad you enjoyed that one. It was LONG but there was a LOT to talk about!!!!🧬💜🦓🎙
@@katherinetkillian3176 I really liked that one also and am so glad you find actionable items in all of them. That is the goal! 🎙🦓🧬
I had a cat scan with dye and spent the night in the ER getting two bags of IV fluid....I needed a third, but was having a reaction to the IV fluid. Nothing to fool with folks.
Ugh! I am so sorry and hope you are doing better now!