The Tests May Be Normal But We’re Not

The Disease / Monday, August 7th, 2017 / no comments

My daughter was born with a good sized, raised, reddish brown “mole” over her right eyebrow. The doctors said it wasn’t anything to worry about and she could have it removed later if it bothered her. I wish we would have had it removed and biopsied before it fell of during her toddler years.

I had all but forgot about it until recently. I am pretty sure now it was a mastocytoma.

She had a few other symptoms throughout childhood that, now that I look back, make me suspect that she, too, has mast cell disease and it breaks my heart as her mom.

For one thing, just like my older brother who is very, very ill now, she couldn’t drink cow’s milk as a child. It burned the roof of her mouth, she said. She also couldn’t drink soy milk, which is mainly what they had as an alternative back then.

She was always sniffling and sneezing, too, just like me and my mom and my brothers and sisters and just like her brothers, but we’d always passed our “allergies” off as being because we lived where it’s dusty or with pets or whatever.

She also woke up one morning when she was about 10 with her bottom lip swollen to about four times its normal size and we never knew why. The same way we never knew why her brother had a similar spontaneous reaction that one isolated time that left his entire face swollen and him struggling for breath for no apparent reason. We got him to the ER and they sent us home with an epipen but he’s never had another reaction like that one.

He has been diagnosed with MCAS since then.

As my beautiful girl became a woman she found herself having a lot of weird health problems. The migraine that left her feeling like she’d had a stroke sent her to the ER a few years ago. The bladder and kidney and liver pains that sent her to the doctors to get checked only to have the tests always come back as “normal”. The same way my tests always come back “normal”.

There are just a lot of things. Little things you might not notice or be aware of that are all signs of mast cell dysfunction. I know them now too well so the red flags stand out glaringly to me. Sometimes I want to wake me and my children up from this bad dream. I am afraid I have “cursed” an entire generation with a disease I didn’t even know I had.

Mother. Wife. Patient. Keeper of Huskies. MCAS blogger & advocate. Living life in the mast lane with the Grand Tetons & Yellowstone as my backyard. You can also find me blogging at Life In The Mast Lane and The Empty Nest Housewife.

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