Diagnosing Mast Cell Activation Syndrome (MCAS) – The decision I will always regret and life post October 2014 flu shot (post 4 of 4 in series)

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

The decision I will always regret and life post October 2014 flu shot


Katie’s list of symptoms included the following: 24/7 headaches and migraines, 24/7 stabbing ear pain, hyperacusis, fatigue, abdominal pain, nausea, all over joint pain, constant sore throat, visual disturbances, light sensitivity, cognitive issues such as memory and severe comprehension problems, random numbness and tingling, weird “bug crawling” skin sensations, generalized weakness throughout her body (it was difficult for Katie to just sit in the shower to bathe), dizziness, fainting and heart palpitations. She slept long hours and stayed in her bedroom shielding herself from the noise of everyday living.”

Katie’s story is much like mine, except Katie’s story about the Gardisil vaccine. My story, the decision I will always regret, is about the flu shot that I received in October 2014 for work.  Katie’s experience is nearly identical to mine, except I had other known underlying issues. My hypothyroidism wasn’t well controlled and it was difficult finding common ground with my endocrinologist.  Despite my symptoms and somewhat abnormal lab results, it was still a challenge trying to get her to pay more attention to the signs that my thyroid was not stable.  I attempted to bring up different thyroid medications and other therapies, versus what I had been taking for nearly ten years; however, my questions were brushed to the side and I was told that things were status quo.
In addition to hypothyroidism, I dealt with other issues related to EDS: Chronic Fatigue Syndrome, Fibromyalgia pain flares and Dysautonomia. For me and anyone like me with EDS, our bodies are more predisposed to these issues because connective tissue is everywhere. There are various reasons and theories about why those with connective tissue conditions seem to be more likely to develop other chronic and auto-immune conditions.  However, the link(s) have yet to be fully understood and many have not been discovered.
Another related issue that many of us have, is some type of mast cell activation disorder. Mast cell issues are even less understood than EDS, yet both conditions are comorbid in a good majority of us. Vaccine related reactions like Katie had, are not uncommon in those with mast cell issues, EDS and other chronic and multi-systemic conditions.  Unfortunately, there’s no specific study that states these facts or even shows that we are more likely to have issues — it is one of those known possibilities that does not have a ton of research to back it up. The link or reasons why have not been found or proven and conducting studies would be incredibly difficult, costly and hard to control, because we are all so different.  However when it does happen, it’s not surprising.
I look at it like this – it’s homeostasis of the body.  When you have a fundamental defect in the way your body is built (for me, it’s EDS) or an immune system that was already fighting against something much like the young girl that I quoted above, it’s the perfect storm for complete immune dysfunction. Homeostasis is disrupted.
Important point –  My experience is my experience and Katie’s experience is hers. The comment that I made mentioning that vaccine-related issues are not so uncommon within the chronic illness communities I work with (and am in myself), does not mean that I’m suggesting that people should not get vaccines, or that they should not be administered. Professionally, I see both sides and you can’t deny the research that is there supporting either argument. What I personally feel is best for my body, is a totally different story. However, I have no idea what the right answer is, because the illnesses that vaccines prevent against, including the flu, do kill. And they especially cause fatalities in the populations who have suppressed immune systems or immune dysfunction.
Mast Cells in loose connective tissue – the most prevalent type of connective tissue in our bodies.
This is where mast cell activation disorders can come into play, because mast cells are housed in our connective tissues and they are our allergy cells. Hence why, if your body doesn’t like something, it may not have the “typical” allergic reaction, but it could have a more systemic, slowly building one, that causes multi-systemic symptoms — including joint pain and extreme fatigue. This is a different type of allergic reaction – one that is overlooked over and over again. Our healthcare system is not set-up to think about or even routinely to look back at either an underlying genetic condition or another disorder that may have been overlooked.
All of this is particularly interesting because of my visit to see Dr. Afrin back in June 2015. Dr. Afrin is one of the main researching physicians for mast cell issues, devoting his life to helping patients who cannot find help elsewhere. Dr. Afrin was professional, thorough and I will be forever grateful for the work that he’s doing.
I posted two different posts on about my visit to see Dr. Afrin on my Facebook page after my visit, and recently posted them again on my website as part of this four post series.  I wrote about what I go through — the thoughts in my head, versus just listing my symptoms (links are, below for anyone interested. In my follow-up posts, I also list a bunch of other questions that I had emailed Dr. Afrin & his answers). I’m sure I’m not alone wondering what a “reaction” is like for others, especially if you are not in full anaphylaxis. To read about what a typical reaction is like for me, go here.  IMG_3801
So, this last post, other than to share Katie’s experience, which was much like my own post-flu shot in October 2014, is to say thank you. Thank you to everyone who has helped provide answers and feedback and associations to my random symptoms and quest to find research. For me, one of the most important things I learned when I first joined Jan’s group and then met Cathy, Jenn and so many others, was how mast cell reactions can present (i.e. various ways reactions can present and even the different levels of anaphylaxis).
Of course, we are all different, but I asked a lot of questions about things I was feeling. I came to realize that much of what I had dismissed for years, as well as the more severe issues I’d had recently, were various symptoms of mast cell reactions and even different levels of anaphylaxis. It’s still hard for me to grasp where one kind of reaction ends and one begins, because saying anaphylaxis just seems like such a strong word and it is. It should be, but what I constantly struggled with was if I was not passed out and dying right then and there, how could it be anaphylaxis? I felt like a drama queen using the word anaphylaxis and no one would believe me anyway. I know now that there are varying degrees of anaphylaxis.
Having people respond to my questions helped me learn more about what was going on, connect dots that I didn’t know needed connecting and finally led me to make an appointment to see Dr. Afrin after trying many things without success.
After I had an allergic reaction to chromolyn sodium, things just kept spiraling down by the day. Thankfully, Cathy and Jenn were always there to field my random requests searching for links connecting MCAS to a boat load of crap and as a result, I reluctantly kept my appointment with Afrin. I even posted in Jenn’s group that I thought that I had to cancel my appointment, when I thought I had a conflict with work, but the truth is… I just wasn’t confident that I needed to go. There was the part of me that knew I really needed to go — but didn’t want to admit it.
Honestly, I was and am scared of MCAS. It’s a fear that stems from my personal belief that MCAS/MCAD is somehow connected to the condition that my mom passed away from (Amyloidosis), because I’ve always felt that there was a hereditary component. It’s also a fear due to the fact that MCAS is so unpredictable and out of our control, especially once symptoms get tipped to the other side. Stress is also its biggest trigger – not the best thing when your body does not process stress or strong emotions well.
Despite the fact that I’m the ultimate optimist, a believer that most things happen for a reason and that your mind plays a huge part in your health (good and bad), I also know that MCAS is where my mind and body truly meet. My mind and body meet down in the deepest parts of my body, quiet & hidden, stewing on the weakest part of my mind – the part that deals with stress. For the last few years, much of my stress is due to factors out of my control, but I’ve been fighting like mad to make sure that it does not stay that way for long.mast-cell-21-638
Truth is, I am more than aware that stress and I have never done well together and things seems to explode when I least expect them to.
At this point, I have received most of my lab results back, but I’m still waiting on biopsy results.  Dr. Afrin does not make an official diagnosis and recommendation for treatment until all labs are back and you have enough positive lab results. So, for now … I will kep waiting, trying to manage my emotions, decrease my stress when possible and try to avoid known triggers. However, I know without a doubt that I would not have made the appointment and also kept it, if it were not for everyone that I’ve met in the few mast cell groups that I’m a part of.
It’s crazy to think about it this way, but it’s quite possible that the support and knowledge that I gained from my friends and other members of the same MCAS group, all helped save the quality of my life and quite possibly my actual life in some ways. If I had kept ignoring symptoms and not sought a proper diagnosis and treatment from a physician who specializes in MCAS/MCAD, I would not have known what was happening or what to do when reactions were severe.
So, thank you!  Thank you, especially to Cathy Scofield, Jenn KulikJan Marie Smith and to the physicians that I saw for helping answer my many questions. My experiences were never questioned and no one doubted what I was going through, which is sometimes all you need to start feeling better.
Our Stories of Strength is currently accepting submissions for the MCAS/Mastocytosis
anthology. Here is a link to our call for submissions page that discusses this anthology:…/the-full-list-of-titles-…/
Additional resources and links: 
Anaphylaxis Emergency Information
About Mast Cell Activation Disorder (and its subtypes)
– Link to 1st post about visit to see Dr. Afrin
– Link to 2nd post about visit with a typical reaction for me
Link to 3rd post with more questions and answers about MCAS/MCAD
– Link to article quoted above
University of Minnesota’s blog post on MCAS patient success story referenced above
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.
– If interested in an integrative health and wellness conference, that discuss chronic conditions such as Mast Cell Activation Disorders and Ehlers-Danlos Syndrome, join us at Wellapalooza!
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: 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.

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