As promised, I am back with more from Dr. Afrin’s incredibly informative book, Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity.
Whew! That’s a mouthful of a title, isn’t it, though? That’s because a complicated disease deserves a complicated title.
I should mention, again, that I am not affiliated in any way with Dr. Afrin and I don’t make any money promoting his book. I even happily paid full price for it and plan to buy a few more copies to give away right here on MastCellDisease.com in my upcoming Spring Subscriber Giveaway because I am a patient who greatly appreciates his work and believes every patient (and doctor) should own a copy of it.
It’s that good!
Also, I should state here that this is not medical advice. This website is about bringing awareness to and blogging about my own personal experiences with mast cell disease. If you believe you have mast cell or any other disease, please see a doctor immediately.
I am up to chapter 12 now, entitled “The Consequences of a Dysfunctional Clean-Up Crew: The Lymphatic Findings in MCAS”. From the opening paragraph:
The body’s lymph nodes, as well as the spleen (essentially the body’s largest lymph node), are major parts of the immune system, and given that the mast cell is not only part of the immune system but also produces a wealth of mediators that influence immune system function, it shouldn’t be surprising that the lymph nodes and spleen — responsible for “cleaning up” from the breakdown of other cells (both human cells and foreign microorganisms) in the body — often are affected in MCAS.
I know I personally had a lot of waxing and waning lymphatic issues off and on my entire life. In fact, just last week it felt like someone was lifting me up with their thumbs under both of my arm pits, which is something I get often when I’m sick. My lymph nodes in my neck will ache, too, sometimes.
Oddly, I don’t get a lot of swelling in any of my lymph nodes, but I do get a lot of dull, achy pain. Regarding this, he says:
Enlargement of the lymph nodes is seen in a sizable minority of MCAS patients, and just as MCAS itself principally manifests waxing/waning inflammation migrating about the body, so, too do the lymph nodes — in different parts of the body, over time — wax and wane in size.
So it’s not unusual to have lymph nodes that grow and shrink with MCAD, but it’s not common. It is common, however, to have lots of different symptoms that wax and wane and jump all around from place to place in the body with this disease. I can definitely relate to that!
It complicates things when these symptoms, like lymph node pain or spleen enlargement, which he also talks about in this chapter, are also signs of other diseases and disorders and need to be looked at to rule out other problems.
It’s important to keep in mind, too, that the full spectrum of symptoms and abnormalities seen in any given MCAS patient is of course not coming exclusively from inappropriate mast cell mediator release. If only this extremely complex disease were that relatively simple!
He also spends a bit explaining how:
Dysfunctional mast cells can wind up causing many different problems through both direct and indirect routes.
I won’t go into too much more detail, I’ll let you buy and read the book to learn more for yourself instead, but as you can see, this disease is very, very complicated and can have consequences that are far reaching.
It can also have surprising impacts too:
I’ve also now seen a few patients who were initially found to have cancers with poor prognoses and who indeed did poorly with treatment but then, upon finding and successfully treating their MCAS, experienced a turnaround in their cancers.
Can you imagine?
Like I said, you really need to get a copy of this book so you can read it all for yourself. Dr. Afrin is a wealth of information when it comes to MCAS and so much that relates to it, and in this chapter, like in so many others, he tells in detail a real-life patient story to illustrate the difficulties MCAS presents with all of our systems, including the lymphatic one.
These patient stories are invaluable, as is the rest of the information contained in these chapters.
Don’t miss my next installment when I touch on chapter 13, called “I Just Can’t Catch a Deep Breath: Pulmonary Findings in MCAS“. This one I’m really excited about because it explains so much of what I’ve been going through, just like every chapter up to this point, really.
I’m excited to be able to share this information with you, my dear readers, too, so make sure you subscribe by email using the form in the sidebar and that way you won’t miss a single post including the ones from my in-depth series on Never Bet Against Occam.
Until then, you can read all of the parts of this series by clicking >>> here and won’t you please take a moment to share them using the social media buttons below in order to help bring more #mastcelldiseaseawareness?
Remember, we’re in this craziness together!
xo Michelle Dellene