Hello! Welcome back to my in-depth, chapter-by-chapter review of Dr. Afrin’s book on mast cell disease, Never Bet Against Occam. If you haven’t seen the first seven parts yet, you can read the entire series by clicking here. Then you need to click here and buy this book for yourself. While you’re at it, grab a second copy for your doctor, too!!
Please note that I am not affiliated in any way with Dr. Afrin or his book. I am just a patient who fully supports and endorses his work. I happily paid full price for his book and would do it again, because it’s that good!
Dr. Afrin is a hematologist who has seen over 1,000 patients with this disease, which means he is a wealth of knowledge for both us as patients and our doctors and we are so very lucky to have him. With his books and lectures we can all better understand this incredibly complex disease. In fact, you can watch his entire video presentation on mast cell activation syndrome by clicking on the MCAD Explained tab at the top of this page then scroll down to the first video on the page. It’s the most up-to-date and thorough one I’ve seen so far and his book has even more to offer, which is why I’m sharing just a fraction of it here at MastCellDisease.com.
So I’ll just hurry up and jump right back into it! I’m up to chapter 11 now. This is where he describes the oral findings in mast cell disease, and, no surprise here, there are many. Here are just a few he mentions:
- sores and ulcers
- burning mouth syndrome
- white patches
- lichen planus
- tickle or itch
- proximal dysphagia (difficulty swallowing)
- edema (swelling)
- lump in throat
- excessive mucus
The medicines help tremendously with all of these symptoms but they can then leave you with dry mouth — another one to add to the list, but one I gladly exchange since before the medicines I had many of these listed as well as excessive saliva production.
He had mentioned problems with crumbling teeth in a previous chapter, and I can attest to having both fragile teeth and I also get bleeding from my swollen gums along with a pocket of inflammation that comes up and down above one tooth whenever I’m flaring. I also lose my voice and have to clear my throat constantly because it feels like it’s swelling shut and I definitely get a lot of mucus production. A lot.
The mucus there for a while was almost unbearable. Before my diagnosis I was drowning in it constantly. Dr. Afrin mentions that he sees this in patients and in some, the outcome is not as positive as my own experience:
I have encountered a couple of other patients who report excessive mucus production as their chief complaint and in whom I found evidence of MCAS — but have not yet been able to find helpful therapy.
Yikes! Those poor souls.
I’m lucky in that I am finding success with trigger avoidance combined with the medicines I’m taking. Even if I’m still adjusting the doses and still having bad days (or weeks, like recently), the medicines overall are definitely working and I almost forget how much mucus — not to mention everything else — I used to deal with every day. It’s almost easy to forget just how sick I really was, and still am just under the surface.
To put it into perspective, when I was diagnosed I had 54 out of the 58 symptoms listed on the MCAD Symptoms page. Now when I flare I can count about 25 of them showing themselves. In between I may get one or two, but I have had periods (days long) with ZERO symptoms. That’s right. From 54 to 0. I call that a success.
It’s a miracle for me, honestly, which is why I write so much about it. I want people to know that this disease can be managed once you understand it, and while I am far from “normal” I am doing much, much better than I was a year ago. I’ve had days where I feel better than I’ve ever felt in my entire life!
I know when you are really sick it’s hard to imagine it never stopping, like a nightmare that just won’t end. Well, I found out that it can honestly just magically disappear. And almost overnight, too, just like my granuloma annulae rash which has faded almost completely now just two days after starting Singulair! So that makes me happy. Plus I feel much better already after adjusting my medicines.
Sometimes it’s that simple.
Make sure to subscribe by email using the form at the top of the sidebar so you can join me next time (and every time!) when I get into chapter 12 of Never Bet Against Occam which is called: The Consequences of a Dysfunctional Clean-Up Crew: Lymphatic Findings in MCAS. I’m personally interested in this one because my own lymph nodes under my arms have been hurting badly this last week and I’m sure it’s related to my mast cell disease. How could it not be, right? I’m sure he’ll have the answers in chapter 12, so don’t miss out.
Until then, won’t you please take a moment to share this post on social media? This website is dedicated to bringing awareness to mast cell disease and I can’t do it alone. I rely on dear reader’s like you to help get the word out. Remember, Dr. Afrin believes 1 in 6 of us may be suffering with mast cell dysfunction, so that’s a lot of people suffering needlessly! Thanks!!
xo Michelle Dellene