Mast Cell Activation Syndrome - Pain and Neurological Manifestations | Dr. Virginia McEwen, MD, CCFP

Dr. Virginia McEwen, MD, CFPC, Pain Medicine Consultant, presents her knowledge and insight on Mast Cell Activation Syndrome.

Presented at the 9th Accredited ILC Conference: A Lifetime of Learning on Saturday, November 5th, 2022.

[LaynieFingers]

I am sitting here in tears, because sudden my life makes sense. I was dx'd with floppy joint syndrome and orthostatic intolerance at 17. Thought id learned all about it, then forgot about it, basically. Im 51 now, dealing with basically everything listed and i felt like i was losing my mind. Im waiting for an appointment with an EDS specialist for specific testing, and i will be discussing this possibility with them.

Thank you for giving me a glimmer of hope!

[trsavage]

Thank you for posting this podcast. Spreading awareness and information about MCAS is much appreciated by those of us that have this, as few doctors and medical practitioners have even heard of it. It is far more common, life altering and devasting than most people realize. Thank you again.

[clemensh]

It looks like very many MCAS cases are caused by hidden mold in the living/sleeping rooms. I would recommend every MCAS patient to try to sleep in another house for 2-3 weeks and look what happen.

Also try to cut out Gluten, Milk and Sugar from your diet

[ashleyaschliman]

Thank you for your presentation. My oldest daughter has been diagnosed with MCAS and I'm showing a lot of the symptoms as well. Now my youngest daughter is showing symptoms at 9 yo. Getting a diagnosis and treatment is challenging, even in the US. We lucked out and my daughter had an elevated tryptase when her other labs were drawn. We all suffer, but struggle to find the answers, validation, and support we need.

[GrammaSheila]

As a Canadian I thank you for bringing attention to this debilitating illness. I have Lyme disease, high level of SIBO and MCAS. I was originally diagnosed by my family doctor with Fibromyalgia. Several times she offered me antidepressants and suggested yoga and that was pretty much it. After showing her a positive test through Armin Labs said she has never heard of SIBO and I couldn't possibly have Lyme. I tested positive for Lyme through Armin Labs in Germany and am symptomatic. I have been taking antihistamines for over 40 years and can't seem to do without them or I get hives and itchy. I have temperature dis-regulation and so many other symptoms. I had no idea there was a name to all the symptoms that I've had for years. The Lyme doc I'm will explained MCAS to me and it all made sense ... all the weird symptoms I've had since around 12 yrs old or so. They just really increase and some new ones came after I contracted Lyme.

[jefferyashmore]

You are right on target had it all my life actually got diagnosed correctly a few months ago. Mcas, heds, tachcardia, Gerd, sibo, lbs, and more. Cromolyn oral solution has done wonders for pain and neuropathy. Been abused by medical field for years, been told I was crazy, hypochondriac ect. 18 operations latter and multiple destroyed muscles, injuries joints ect. I am a 59 year old male, disabled now. You are right on track. Jeff from Illinois usa.

[RunningWithSauce]

I felt a warmed heart as I listen to your introduction. I wish all the primary physicians that failed me had your passion and drive to be curious.

I have Systemic Mastocytosis and it took years of bad diagnosises and therapies to get that Dx.

It took one curious allergist to run a tryptase on me after she had read about SM. Then on to BMB.


It’s been hell. Fragrances in perfumes/colognes, laundry, deodorants, air fresheners etc shut my respiratory system down.

People don’t believe it, even some relatives leave their glade plug ins in, knowing I’m coming over.

Thankfully im on bezuclastinib now and it’s been miraculous.

[NovemberRain]

MCAS, widespread body pain and neurological symptoms are what I have experienced post C19 vaccine as millions of others for nearly 3 years now. It mirrors Long C19. I know for absolute certainty because it started within only hours and I've met so many with the exact same issues (or worse). There's groups all over the world of thousands upon thousands of us. I've not had C19 yet. Everything was caused by the jab. I would love to have my life back as it was taken instantly. Thank you, Dr. Virginia McEwen for posting such valuable information. Is there a list of doctors who recognize these conditions in the U.S.? I am repeatedly told I just have anxiety. My arm could be falling off and I would still be told it's anxiety. With the two pages of symptoms I have had and still have, of course I have anxiety, but that is not the root cause for all of my symptoms. Plus, studies have shown that the C19 vaccines cause dysautonomia and anxiety itself so, it's not in my head. Doctors refuse to do ANY in-depth testing or even simply, be curious and caring at all. No doctor has ever even ordered a vitamin / nutrient panel and I simply cannot understand WHY doctors do not start there as the first test always (other than the big payouts and ties they have with Big Pharma). I'm saddened to know that millions are going through this not realizing it's from the jabs as there was no informed consent.

[kriskozolanka]

Agasp...That was Brilliant...with the science mapped out. I feel I 'm getting closer to understanding me. It appears we all are just beginning to see work in front of us is daunting. Head down ...move forward on all frontals. Thank you..

[magicalpatterns]

Wow doctor. You are so extremely polite and considerate. Thank you for your compassion explaining and guiding other doctors for us to be respected and validated.
Do you have any input in future videos about the benefits of IV’s saline for MCAS patients? Thank you 🙏🏼

[TammyOne-rdng]

Long exposure to mold started mine. Well mold and severe stress

[eyeOOsee]

Dr. McEwen, thank you so much for posting and sharing this valuable information! And you did so perfectly! I wish I knew this information when I was going through the hell of medical mismanagement. The hope you bring to the Medical field is encouraging. Thank you again.

[Esirre]

you made this information very digestible and entertaining

[drsethsr]

After dozens of specialists, I had vitamins labs done, which included Vitamin C, which I had a severe deficiency. I had taken 500mg twice a day without issues until I got an infected spider/tick bite, then quit due to reactions. 4 years later I pushed through and took Vitamin C and multivitamins, and things have greatly improved. My previous doctors ordered D3, B12 and folate, but none of the others. I have been able to eat beef again, and have been on a keto diet, and my GI symptoms have eased to where I stopped famotidine. I am also only taking diphenhydramine as needed. I previously was on Cromolyn Sodium, Xolair injections, and Low Dose Naltrexone with little improvement. Doctors should order vitamin panels, since many people are malnourished.

[pippamellon]

I this is amazing..your describing all my symptoms. And my triggers..I have constant pain..some days worse than others..diagnosis fybro..in 2008..I never believed it was…I got friendly with a girl who was Auvhedic..she told me two years back she thought this was what I had..

[billieruth]

As a new born two moths premi- two weeks old, something set off my immune system. I was allergic to all forms of milk, severe asthma & allergies. I was allergic to dust, animals, smoke, grass, carpet, all but meat a few canned vegetables and a few fruits. Almost put in a bubble. I was allergic to the serum that held the allergy shots together and the syringe. My meds had to be special made outta state, given to me through a gold syringe and needle, or silver, I don’t remember. I had anaphylactic shock many times, severe asthma, severe allergies, bladder issues, welts, high fevers they iced me down in the hospitals. they had to ice me down, allergic to vaccines. Double lung pneumonia every year 1-2 times a year till I was 7 or 8. Fell out of a moving vehicle at four, hitting my head and causing severe migraines to hit, along with my allergies. We suspected I was allergic to my fluctuations in hormones.I couldn’t breath out both nostrils till 7th grade. Grade school and younger, I woke up eyes sealed shut from dried crust from allergic reactions. By junior high, I could eat many foods, and less reactions. Eventually I rarely reacted to much even lungs were great.
2007 I get Lyme, 100s of nymph ticks all over me. Got bit again in 09… realized Lyme wasn’t going away, treated then hit it hard from 201 0:405-19
Get CoVid, whole body nerves went on fire, felt like I was radiated inside. 2021 dr put me on ivermectin to treat Lyme coinfection, year later my Lyme is in remission.
From late 2019 -2021 I had wide spread neuropathy, I also had a tumor on my pituitary, causing adrenaline dumps. Dr believes after 3 years of digging, I got reactivated MCAS . Only it was attacking my organs, nerves and brain, not how it was when I was young. I had so much adrenaline I had became my own epi-pen. Which is why we think my throat wasn’t closing and swelling shut like it did when I was little. Why it took so long to figure out. I’m 2021 everything went boom, CoVid brain infection 🤷🏼‍♀️ but I hallucinated, personally change, never violent, but sometimes got angry, didn’t call people names, but mostly fled or froze, …. autoimmune immune encephalitis.
I lost almost every friend I had, a fiancé… no one believed I was hitting a ten pain in my nerves every 4 hours when my meds wore off. Three years of the worst hell and torture!! I had natural childbirth with one of mine, and this pain was way worse. But you can’t just go around screaming 🤦🏼‍♀️
I stayed in shock three years, in severe pain, 3-4 hours sleep. MCAS!! Dr believed the only reason i wasn’t having seizures was all the adrenaline. When I had the huge reaction in 21, I couldn’t eat for like 6-8 weeks, everything burned. Organs kidneys!! I ate just a bite of a cracker brand from Europe, a cracker or two for 8 weeks. Before we realized it was MCAS. I’m allergic to vaccines, medically excused for decades. The allergist I had for 25 years wouldn’t see me unless I got a vaccine, neither would the neurologist. My family Dr and I researched and we stumbled on MCAS. It wasn’t called that when I was little. So I’ve been on antihistamines, other things, cannibis is what I did for pain… needed opieds but no way was I getting on them.

I feel like iv been tortured half my life

[Mokshana.ankara]

omg 3 minutes in and you're already spot on with my neurologist's assumption about my diagnosis: functional neurological disorder 🙄

[MichelleCoreyThyroidCure]

Thank you for this informative discussion. The information you've shared will make a significant difference, and I will ensure it reaches all my colleagues.

We frequently find MCAS in many EDS patients. Still, we see more and more cases pop up in people without EDS who have been diagnosed with IBS, IBD (diarrhea and constipation), nausea and vomiting, autoimmune spectrum disorders, chronic urticaria, hives, chronic inflammatory brain conditions like ADHD/ADD, mood disorders, depression, bipolar, insomnia, the full spectrum of neurological conditions, red, scratchy and blurry eyes, sinusitis, chronic pain syndromes (esp ice pick or debilitating localized pain) cervical injuries, food sensitivities, celiac, toxic exposure (esp mold) and POTS and the lists go on.

You are correct that the diagnosis is tricky, especially when ordered in the ER or from an allergist or specialist. Tryptase is elusive, and even 24-hour n-methyl-histamine won't reveal much - because you have to catch it right when it's happening! 

These mediators don't always present which makes this diagnosis tricky - and though not the best, sometimes we do resort to mast cell stabilizers to calm things down and they work MOST of the time while we look for the triggers - infectious (usually) stress and toxins,

This education is not just for people with an EDS diagnosis but for everyone with this sequelae. I am grateful for your erudite discussion and attention, especially with pain patients.

[TheTetheredButterfly]

This is fantastic. I have mcas, eds and

[criticalmass]

I have had all the symptoms of MCAS lifelong but have no hope of finding a doctor who either believes this syndrome exists or would be willing to refer to one who does, even if such a person exists in my country (UK totally broken health system). Have seen a top immunologist who shrugged me off with an M.E. diagnosis ignoring 90% of my symptoms, a GI specialist who dismissed my symptoms as IBS & told me to stop eating broccoli as my treatment! I have to rely on self treatment & OTC supplements. Any help in that direction would be so appreciated, there may be 1000s of us who may have no access to a doctor like you or the money to afford private treatment.