Diagnosing Mast Cell Activation Syndrome (MCAS) – Post 2 of 4 in series

Follow-up to my post about flying to see Dr. Afrin.

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Complexities of mast cell degranulation

First, I think it’s important to state that Mast Cell Activation Syndrome (MCAS) is one type of mast cell disorder under the Mast Cell Activation Disorder umbrella. Mastocytosis is another type of mast cell disorder; however, it varies from MCAS in that those with Mastocytosis have too many mast cells. Those with MCAS, have mast cells that are very sensitive and react too much. Symptoms are often similar between MCAS and Mastocytosis, but severity of the illness and treatments can vary depending on the actual diagnosis, or type of Mastocytosis. To read more go here.

If anyone is like me, they wonder what others go through during a reaction, or for those who have no idea what mast cell disorders are and what people are referring to when they discuss having reactions, I wanted to write down what I personally go through. There are always different levels of severity or varying symptoms, but I think you can get idea. Instead of writing down symptoms, I just wrote down what typically goes through my head during a reaction. Of course, during full anaphylaxis, someone isn’t usually able to be as coherent, but one thing I’ve learned, is that there are different levels of anaphylaxis and it’s really hard to know what the heck is going on. As I said in my first post, mast cell issues really make you feel straight-up crazy. Something so hard to understand ourselves, is nearly impossible to explain to someone else. They have no idea what causes it (i.e. multi-systemic dysfunctional condition of the body), what not to do or to use with people who have MCAS/MCAD, nor do they realize that there are different levels of anaphylaxis and that any reaction should be taken seriously – Why? Because anything, A-N-Y-T-H-I-N-G, can make things worse and cause life-threatening complications or cause additional stress to the body that exacerbates the episode.

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Mast Cell with its granules that degranulate when triggered

As explained in my first post, stress is the #1 trigger for mast cell issues, and there’s no way to know when stress will cause additional epigenetic changes to the expression of our genes. A change to the expression of our genes due to stress generally does not lead to a favorable outcome. In contrast, an environment that helps decrease stress and promotes an atmosphere of compassion & understanding can have a favorable outcome (and yes, this type of environment can actually cause epigenetic changes that are healthy and healing, as well as can help us, or at least not make us worse).

A typical mast cell reaction for me goes something like this (or what goes through my head):

Am I really feeling this? What is this? I haven’t had THIS before. THIS is new. Damn… all I’ve had are my “safe things.” What is going on? Am I allergic to my computer? To my phone? To the air I breathe or am trying to, because my throat is feeling tight. Wait… am I really feeling this? Is my throat tight? Should I get help? My pulse is high, but ok. No chest pain or at least, not now. Do I have a rash? I’m not itchy… yet. Ugh… I’m feeling really tired suddenly. Like I’m going to scrape myself off the floor to get up, if I ever get up. I can’t control my eyelids. They are closing and oh god, I have the worst headache and I feel like I have bugs in my ears. My face is tingling and I hear whooshing in my ears also. My eyes are suddenly dry and I feel achy all over. My nose feels like it has water up it and I have prickly pins and needles all over my body. I need to lay down, but I was doing something. I had to do something. What was it? Ugh… I can’t remember… again. This is so frustrating. I need to lie down. I feel like I’m going to crawl out of my own skin because I’m so annoyed right now. No one better touch me. My skin hurts now and it feels like I have hot spots all over it. What the he__ are is these sensation from? What am I reacting to? I must be stressed. Oh god, I can’t lay down until I go pee. My bladder is on fire!! OH MY GOD!! MY BLADDER IS ON F-I-R-E!!!!!!!. This is unbearable. I can’t live like this. And now my stomach is all bloated, gurgling and popping. What the f_ck did I eat?? Ugh… I feel horrible. I hope this goes away. I need to take something, but what do I take? Nothing works and I have had reactions to everything I’ve tried. My heart is racing now. Yep, HR is way up and my throat is tight. And now my chest also. Ugh and I have to pee AGAIN! Now I feel like I have been sucker punched deep in my lower abdomen and like someone is stepping on my bladder. Oh god that hurts. My ears are ringing now. Like really ringing, not just whooshing. And I’m cold. I’m shivering. Do I have a fever? I feel kinda hot. Am I getting one of those fevers again? Is my throat sore? Do I have strep? My hips are killing me and my lower back. And now I feel sick to my stomach. I can’t tell if I need to eat something or not. What would I eat anyway? It would just make things worse. I have got to get these contacts out. My eyes are burning and dry. And I need to lie down. I feel like I have something stuck in my chest. Oh god, I’m going to collapse I’m so fatigued. My legs feel so weak and like I just did a hard workout. I can’t remember what I needed to do. Where are the kids? Do I need to pick them up? Are they here? Yes, they are here… school is over. This is so annoying. I have so much work to do and I don’t want to be up late again. I can’t think. I just want to be able to think and not have my brain be mush. Everything is jumbled and I can’t sort it out. I can’t get one f_ng thing done or if I do, it takes me f_ing hours. Where is Brian today? My feet and hands are so red and swollen. They look like they are on fire. God, I’m dizzy. I feel like I have the room spins and I’m not even drunk. That kinda sucks. Don’t say sucks. That’s negative. This will pass. Just go lay down and it will get better. I have to pee AGAIN and just lay down before I get sick to my stomach or have to use the bathroom again. I have that epipen. Should I use it? I guess that answers my own question — if I need to ask if I should use it, then clearly I don’t need it. But what the h_ll is going on? I just need to lie down, because the thought of even getting out the epipen if I needed it is too exhausting right now. I hope I feel good enough to workout later. This better not mess with my workout. I have to pee again. This pain is unreal. Now it feels like my whole pelvic area is inflamed. I hope this passes, because I don’t want to go to the ER. They will not have a clue what to do and will think I’m crazy. Maybe I am crazy. Maybe I’m just making this up, because I can’t explain this, so how would anyone be able to believe me for a second? Wait, let me write on my legs and see how bad it is. Yeah, it’s pretty bad. I wonder how my eyes look? Great, swollen and black. That’s always a good look. It’s the one where I get the “have you lost weight?” Nope, my body is just in a f_cking constant state of thinking it’s on the attack. I’m ALL D-O-N-E with this.

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THIS is every day, several times a day now. And yes, I use that many curse words and more when I’m having a reaction. MCAS definitely changes my mood in split second and I’m not someone with a short fuse usually. To say the least, the cognitive issues due to MCAS have been the most devastating issues for me. However, what I have learned, is that I have experienced varying degrees of anaphylaxis and unless you are aware of the different stages, many signs and symptoms are easily overlooked.  See graph below.

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Last, post 3 and 4 in “Diagnosing Mast Cell Activation Syndrome (MCAS)” series will be posted soon. I’ve also included links to my first and second posts that I posted on my Facebook page. Posts 3 and 4 will included additional information on MCAS and other pertinent information.

Resources for Mast Cell Activation Disorders:

Anaphylaxis Emergency Information

About Mast Cell Activation Disorder (and its subtypes)

Link to post 1 of 4 in the “Diagnosing Mast Cell Activation Syndrome (MCAS)” series.

Publication by Dr. Afrin – Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options

Dr. Afrin’s contact information in Minnesota

EDNF Learning Conference Slides by Dr. Maitland

EDS Awareness webinar recording by Dr.Maitland

EDS Awareness webinar recording by Dr. Theo

The Mastocytosis Society

– Dr. Theo’s website with various publications on mast cell activation disorders & relation to various other conditions, such as autism, interstitial cystitis, fibromyalgia and more. www.mastcellmaster.com.

– Link to 1st post on my Facebook page: https://www.facebook.com/KendraNMyles/posts/932780550117351

– Link to 2nd post about visit with a typical reaction for me, and more questions answered: https://www.facebook.com/KendraNMyles/posts/932813903447349

– Link to Our Stories of Strength page: http://ourstoriesofstrength.com/…/the-full-list-of-titles-…/. We are currently accepting submissions for several anthologies in the Our Stories of Strength series, including our MCAS/Mastocytosis anthology.

Edits by Justine Case – wonderful friend, incredible writer, fellow EDNF HelpLine volunteer, and EDSers with MCAS.

DISCLAIMER: The information if for information purposes only. The above information and statements should NOT be construed as an endorsement for a physician mentioned on this website or in this post. You MUST do your own due diligence. This site accepts no liability WHATSOEVER if you consult any of the physicians named or those who I’ve personally seen, or medical care (or lack there of) in the event of a true medical emergency like anaphylaxis. Always seek the care of a physician concerning your health or any questions you have. If you have questions about anaphylaxis, go to: http://www.aaaai.org/conditions-and-treatments/allergies/anaphylaxis.aspx. This website and the four-post series is for your information ONLY. This information should not be viewed as a directive or as complete medical facts. You are responsible for your own health and well-being, as well as to do your own medical research. Please read additional information here.