Anyone who has been diagnosed with MCAD can probably tell you that they have weird, quirky symptoms that never made sense until they found out that they have faulty mast cells.
I definitely have a few of them myself. Some of my odd symptoms are covered in the research by the experts, like Dr. Afrin in his book I’m reviewing, and others I haven’t found anyone talk about but I know they are related to my hair-trigger mast cells because once I got on the right medications and started avoiding triggers they magically disappeared!
One weird symptom that stands out which I haven’t found anyone talking about is for my entire life I have never been able to cut or file my toenails on my big toes without it causing my ear drums to hurt! Like, really bad! To the point I dreaded doing it because it hurt so much.
Yeah, pretty weird, right?
It doesn’t happen now so I know it’s definitely mast cell related but I still don’t know why or how my big toe nail is somehow connected to my inner ear but there you go.
It doesn’t stop there with my feet, either. When I’m sick, the heels of my feet get very rough, dry and cracked but as soon as I’m not degranulating they immediately go back to being smooth and soft. It was one of the first things I noticed within days of being put on the medicines. Almost a lifetime of struggling with dry, cracked heels vanished practically overnight!
So that’s pretty weird. And awesome!
Sometimes my hair follicles along my hairline hurt, which is something I haven’t heard anyone else talk about, disease or not. I also had a permanent numb patch on my upper right forehead that disappeared when I found the right medicines.
It’s difficult to describe the visual anomalies I get, so I’ll try to do that in another post but I definitely get some weird things going on when my eyes are open AND closed. When I’m flaring, of course. When I’m not it all just magically disappears.
I also get these little strawberry colored pimples that itch like mad (I call them super-concentrated hive thingies). They come up in one follicle and if I pick it out it stops. If I leave it, it doesn’t spread like hives but it will stay and itch for days until I “kill” it.
When I saw the dermatologist for my granuloma annulare rash biopsy I asked him if he had heard of these and he said no, he hadn’t. I also haven’t heard anyone else talk about them but I definitely get them and they ITCH!
So I kill them.
Those are just a few examples of quirky mast cell-related symptoms I have. It’s just part of living with MCAD but at least now I know why these things are happening, even if they are still a mystery.
In Dr. Afrin’s book, Never Bet Against Occam, which I’m reviewing chapter by chapter right here on this site, he has an entire chapter toward the end (I peeked ahead!) all about how spontaneous human combustion may be caused by mast cell disease.
When I told my hubby about this he didn’t even bat an eye and said, “it wouldn’t surprise me. Your core body temperature at night when we’re sleeping is through the roof!”.
That has always been an issue for me, and for him (the poor guy!). I can’t seem to regulate my body temperature, or rather it can’t regulate itself. I am always one extreme or the other, it seems. In fact, my smart phone does not want to respond to my fingertips a lot of the time because my hands are so ice cold it apparently thinks I’m dead!
When it’s really bad and my hands and feet are ice cold (like they are now) some spontaneous combustion actually sounds pretty good. Anything to warm these cold things up would be welcome!!