Never Bet Against Occam: The MCAS “Bible” In Review (Part Four)

Hello again and welcome back!

I’m just getting into chapter 7 of Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity. If you have MCAS or just want to know everything there currently is to know about it (almost, at least!), then you need to click here right now and buy this book!

I can’t possibly share here all of the wealth of information compiled there, so you really need a copy for yourself.

For the record, I am not being paid in any way to review this amazingly informative book and I doubt Dr. Afrin knows I exist (although he is now a hero of mine). I am just an MCAS patient trying to better understand my disease and pass the knowledge along. As always, this is not medical advice, just my own personal experiences. Please see a doctor if you feel like you have mast cell or any other disease.

I’ve been going through this MCAD “bible”, as I call it, chapter by chapter and summarizing what’s in it and now I’m up to where Dr. Afrin spends the next few paragraphs briefly describing how MCAS affects our hair, skin, nails and teeth. So many things in this chapter, as in the others so far, fit with my own experiences with this disease over the years and they might resonate with you, too.

How does MCAS affect our skin?

Things like a wide variety of skin rashes including; urticaria pigmentosa, telangiectasia macularis eruptive perstans (TMEP), flushing, small cherry red spots called telangiectasias, prominent venous patterns called livedo, acne-like folliculitis, patches of small open sores and the list goes on (he doesn’t mention granuloma annulare here, but it is listed in the index in the back so I’m hoping he gets to that later).

Along with the granuloma annulare (which Dr. Afrin does link to MCAS elsewhere), I’ve had: eczema, psoriosis, acne, hives, flushing, dermatographia (which I’m surprised he doesn’t mention here), and more. When I was being diagnosed I had just gotten over hives from hell and had developed a discolored round patch on my labia that flared up and itched every time I flared up (lol thanks universe!). When I had it biopsied it came back as made up of “elevated mast cells” but it was within the normal range for it not to be considered urticaria pigmentosa. It disappeared after the punch biopsy but I have a feeling it would return if I went off my medications and went back on my trigger foods.

Along with regular hives I also get these little red bumps that form in one follicle and itch like mad. I call them a “super concentrated hive” and if I pick them out completely it stops. They never spread but they itch like MAD and if left alone they eventually disappear after a day or so. Weird.

I don’t have this problem, but he talks about how many patients will have picked open their sores (are they the same ones I just described, I wonder?) and find they don’t heal quickly because:

…one of the end effects of mast cell disease’s impact on the immune system is impaired healing.

He explains that when they bred a specific type of rat in the lab to have no mast cells and subject it to wounds the wounds don’t heal at all. Without mast cells there is no healing.

None. So that’s intriguing.

 

How about our hair? Does MCAS affect that, too?

Yep. Hair problems are common, too, he says. Dry, brittle hair and cyclical periods of hair loss seems to be the most common complaints. I personally go through periods of what I feel is extreme hair loss or breakage, even though my hubby doesn’t seem to think it looks any different. I can tell, though, because handfuls come out in the shower but then it stops and my hair thickens back up, which is frustrating.

Dr. Afrin even mentions this phenomenon in this chapter:

However, even though the patient can tell she’s suffering a lot more hair loss than normal, the general appearance (to others anyway) is usually one of a full head of hair, so this is yet another manner in which MCAS patients are handicapped by appearing normal while in truth suffering abnormalities in a wide range of body organs and systems.

I also get episodes of painful follicles along my hairline. There’s no visible inflammation but the roots of my hair hurts in a patch along my forehead mostly. Growing up, my head was always super tender, too, and brushing with stiff bristles is torture. I have to use a soft bristled brush or forget it!

 

What about our fingernails? Does MCAS affect them, too?!

While I’ve been lucky to have nice, long, strong nails, I have noticed in the last few years that they were developing these long, longitudinal ridges on some of them. I thought it was a vitamin deficiency. They were also beginning to be deformed by bowing in the middle as they grew out. Like with the hair thing, it wasn’t constant and came and went.

Sure enough, he mentions seeing both of these fingernail anomalies as well as small, white spots that come and go and also what he calls Janeway lesions — small short dark vertical lines that appear fairly suddenly in one nail or another, eventually disappearing as the nail grows out. This can be a sign of subclinical arterial clotting, according to Dr. Afrin.

Scary!!

 

Dental decay (and more), as well…

Finally, he talks about how MCAS affects our teeth. Oh, my goodness this is a topic that really hits home. I have had a lifetime problem with my own teeth and gums and only now does it all begin to make sense. Here’s what he has to say on the topic:

MCAS patients also often cause their dentists fits because of how much dental and periodontal deterioration occurs, even when the patient has always been good about attending to dental hygiene. Teeth “crumble” years prematurely.

My overall dental situation is basically a mess even though I do take as good of care of my teeth as I can. Some days it hurts too much or my gums bleed too much to really deep clean them, though.

My teeth definitely crumble easily. By the time I was 10 years old I had 12 fillings. All of them were those old nasty metal mercury-filled ones, too, which I finally had changed out about five years ago. My gums bleed every time I degranulate and I always get charged extra for cleanings because the inflammation in my mouth starts up as soon as they touch me, even if everything was calm beforehand. I need a good cleaning as well as thousands of dollars of dental work right now, but I get triggered badly each time I go in so I pretty much avoid the dentist. I’m going to have no choice soon, though, as I have two cavities that need tending to along with everything else.

Boo. 🙁

I have to stop here and say it’s really disheartening to not be able to do basic things like take care of your teeth properly. It’s really disheartening to have weird skin rashes you can’t control, too. My hair and nails are doing much better nowadays but I have to avoid using chemical products now because of course they trigger me, so the days of going to the spa and having gorgeous french manicures are behind me. Or even using my favorite hair and body products My toothpaste is “safe” now, but tastes terrible — a small price to pay, really. Still, it’s a huge sacrifice especially for females like myself who love being “girly”.

Okay, enough pity partying! As you can see, our skin, hair, nails and teeth definitely are (or can be) all affected with MCAS and I can definitely relate to a lot of the issues he brought up (and more, like the granuloma annulare rash I still have).

Urticaria pigmentosa are typically only seen in mastocytosis so that will always be in the back of my mind, having had what seemed like the beginnings of a clinical UP on my labia. Does that mean I have or had borderline systemic mastocytosis? I don’t know but it’s just one of MANY weird and crazy things about this mast cell activation disease. I look forward to learning even more about it as I get into the next few chapters and I hope you’ll join me next time so we can learn all about it together.

Peeking ahead, soon we will get into how MCAS can:

…affect thoracic structures to mimic a heart attack, and it can affect blood vessels to cause an actual heart attack…

Yikes!!

Again, knowledge is power so arming ourselves with as much information about this disease is crucial to being able to control it properly and (hopefully) live well, despite having faulty mast cells that (unintentionally) want to do us harm.

So until next time, please be kind to your own mast cells and stay safe!!

Also, won’t you please take a moment to share this post on social media? The purpose of this blog is to bring awareness to mast cell disease and I can’t do it alone. I rely on dear readers like you to help spread the word. Thanks and bless!

 

xo Michelle Dellene

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