Photos: MCAD

I’ve taken various photos of my mast cell reactions and thought it might be useful to put them in one place.  I wish I’d had the forethought to video an anaphylactic reaction but at the time I didn’t know what was happening and was terrified and very poorly so it didn’t cross my mind.  Until I was diagnosed with MCAD all the medical staff I saw thought that it was impossible to react to the ordinary things I did and that I was just having some kind of panic attack, so I stopped seeing them and just managed the reactions myself.  Because of that, I haven’t had most of my symptoms evaluated by a doctor knowledgeable in mast cell diseases so I’m only guessing that some of the reactions below were mast cell related, ie the ‘freckle’ pictures and some of the weird rashes.  The flushing and dermographism are absolutely mast cell related and I can reproduce them given the right triggers, ie drugs, heat, stress, pressure, friction, alcohol and certain foods.

Photo of mast cell induced flushing

Flushing due to food reaction

Photo of Dermographism on the arm

Dermographism (aka skin writing) which is a result of over-zealous mast cells in the skin.

Photo of rash on arm

Mast cell reaction to………I have no idea, it just appeared!

Pressure induced dermographism.

Photo of mast cell induced flushing

Flushing as a 3 year old child.

Mast cell reaction to insect bite.

Photo of scratches

Friction induced dermographism

Photo of blisters

Blistery reaction to……I have no idea what!

Photo of a hive

Single hive

Photo of dermographism

Dermographism caused by pads from an ECG machine which was monitoring my heart rate.

Mast cell reaction to an insect bite.

Photo of dermographism

Pressure induced dermographism from bending over wearing tight jeans.

Photo of hives

Group of hives.

Photo of insect bite

Mast cell reaction to an insect bite.

Mast cell reaction to an insect bite which lasted 6 months.

Photo of a possible Darier's sign

Possible Darier’s sign from rubbing a freckle?

Mast cell flushing after a warm bath, ie heat induced.

Flushing due to heat.

photo of possible freckle

Ordinary freckle clump or mast cell skin symptom?

Ordinary freckle clumps or mast cell skin symptom?

Dermographia caused by a neoprene elbow support.

Hives caused by emotional stress which is why I avoid arguments and conflict!

I’m sure healthy people look at some of the photos and think “I get an imprint if I lean on something bobbly” or “I get a red mark if I’m bitten by an insect” but there are differences between a healthy reaction and a mast cell reaction.  For example, my dermographism lasts between 6-24 hours and involves swelling of the tissues whereas the imprint of leaning on something for a healthy person should disappear within minutes and would involve no swelling.  In addition, my dermographism itches like crazy for several hours afterwards, whereas a healthy person who leans on something wouldn’t itch at all.

If I’m bitten by a midgy I get an exaggerated local immune response, with the redness and swelling far outweighing the extent of the bite.  The itching, redness and/or swelling can then last for several days, weeks or even months as it sets off a vicious cycle of mast cell reaction, which wouldn’t be the case for someone healthy.

We can all go red when we’re hot as our capillaries rise to the surface of our skin to cool down, but mast cell induced flushing with heat is extreme and actually makes me feel unwell (tired, brain fogged and kind’ve fluey).  The heat rash also itches, which wouldn’t be experienced by someone healthy.  The flushing when I’ve eaten high histamine foods or taken a drug I react badly to accompanies an anaphylactic event (vomiting, increased heart rate, low blood pressure, muscle spasms etc.) and isn’t an isolated symptom.  I always know when I’m doing too much (either physically or mentally) because I start to flush – this is my cue to go lie down or, if I ignore that and keep going, I will eventually collapse.

 

 

Advertisements

5 thoughts on “Photos: MCAD

  1. Ellie

    Thats horrendous, I only get pressure urticaria & hives from food, sanitary pads, or contact with stuff Im allergic to. I tried the paleo diet & went bright red & itchy from my chin to my waist. Your reactions to things are seriously over the top though. Ouch.

    Liked by 1 person

    Reply
  2. Alexandria Craig

    These photos and descriptions are SO helpful, thank you. I thought so many things were just normal and then when I found out they weren’t have no idea what they were. Thank you for your site and all the time spent putting out such valuable information!

    Like

    Reply
  3. melody

    Thanks, it’s been so interesting to see your photos and follow your story! I think you could write a book–I know you are probably thinking, oh, right. But your blog already has so much of the foundation of it. Just saying, there’s so much good in what’s here.
    I’ve learned so much from reading your blog. Recently I encountered a link you had about anaphylaxis, thank you–extremely interesting. Telling our unusual stories is important, I think, and you write wonderfully. So please, keep on keeping on, as much as you are up for.
    Reminds me of some bits of my story, which I think maybe I should tell, but have a hard time doing–I have granuloma annulare, which I diagnosed myself after getting freaked out by the first one I suddenly had about 2008–I thought it was some kind of fast growing tumor as that’s what it looked like at the beginning–it slowly spread across the top of my hand and then I got one on the other hand, the end of my collarbone, and various other places, but the first one was the most virulent looking. They are all fading some now and maybe will all go away? Years later, I told one doctor I went to about having it and she said, “Can I see? I’ve never seen it before.” So I guess I look at that as a kind of medical service. A dermatologist I went to said, “Eh, there’s nothing we can do [except steroids to suppress it for a while, of course]–but at least it’s harmless.” Just like all those other skin issues of itching and reddening, hiving. Except for cold urticaria, which causes anaphylaxis–or rather is connected to anaphylaxis–and I found out about suddenly having that about 10 years go by jumping in a cold mountain river and swimming around happy, until I got out and felt like I was going to die–and I guess I might coulda? I turned brilliant red all over, my heart beat violently and erratically and I nearly passed out/threw up/died, but didn’t. I was with friends and I just lay down on some nearby rocks and waited. In about 15 minutes or so I was more or less okay. No one else noticed, they were all swimming around, and I didn’t say anything. I used to get horrible welts from a cool breeze–this after loving cold weather and cold water. But now it’s not as bad. I have no idea why, but it’s a more muted reddening and itchiness from the cold. I can mostly ignore it, though I don’t jump in cold water much now–though I do notice it hasn’t seemed to affect me after a sauna–huh??? Maybe that helps my thermoregulation?
    And the strange time I woke up with angiodema–half of my tongue swelled up so bad I couldn’t talk or really swallow. I can’t remember now, but it might have been the left half. It slowly went away, but at least I was able to breathe throughout. My doctor prescribed an EpiPen which I never used–I never had a reaction like that again. I used to react horribly to bee stings, but now I don’t–or haven’t, several over the years were quite mild. I haven’t been stung in a while now, so don’t know. The weirdest thing is that my body keeps coming up with these reactions that I’ve never had and then it doesn’t or it stops being so reactive. I tell you–I don’t have to tell you!–it gets tiresome having so a weird body–but I have times when I can pretend I’m normal and then–whammo–I’m not. For example, I live in Western Oregon and the wildfires are terrible now and I have asthma, edema, IBS, headaches–at worse strange blackouts in which I walk and talk, but don’t remember much–and a range of other strange symptoms from breathing the smoke or maybe also the weird chemicals for firefighting? My joints are stiffening up. It’s been a lovely mild morning, and it seemed the air was more or less okay, but suddenly bad smoke blew in from my open door when the wind got stronger. I jumped up and shut it and the windows and turned up my air filter, but my heart is now beating acutely erratically (this is a gut/vagus nerve symptom, I believe) and I’m dizzy, my vision is blurring. I’m actually used to it. Almost. But the worst symptom I have is brain fog, which makes me have trouble thinking coherently, feel disconnected from my body, and also scared and depressed. Acck. And maybe makes me write long comments.
    So okay, maybe I should write a book myself or at least a blog post, too, even if I’m not thinking so great. I will be tempted to erase all or most of this . . . but maybe am too foggy to do it like my more thoughtful–or restrained–self might when I feel better. I’m definitely now in that bardo realm of dysfunctional fog. I’m staring at this rather blankly, randomly thinking–ish.
    Ah, this is excellently helpful for me to read right now (but then that’s my own predilection for a spiritual grounding): https://www.lionsroar.com/four-points-for-letting-go-bardo/
    And you can erase all this whole long digressiveness if you like. I’m having trouble remembering exactly what I wrote without rereading it.
    But my actual point–and I do have one, yes!–is that I love reading your blog, it’s so helpful! and I encourage you to keep it up on whatever level suits your spirit.

    Like

    Reply
    1. Jak Post author

      You should definitely write a blog Melody! I’ve found it really helpful to write things down – I saw patterns in my symptoms on paper that I hadn’t seen before and writing things down helps me make sense of my feelings and thoughts as I too have awful brain fog.

      Thanks for the kind words re my own blog. I started it just for myself as a sort of diary and to keep track of what was happening as my memory is absolutely rubbish, so the fact other patients have benefitted is a huge bonus 🙂 Jak x

      Like

      Reply

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.