Here’s My MCAS #, What’s Yours?

I know I shouldn’t just go off of the Mastocytosis Society’s list of symptoms that are most likely to afflict patients with mast cell disease because this disease is far more complex than that, but ironically I had made my own list of nearly sixty symptoms that I was suffering with and was attributing to what I thought was “just a milk allergy” (ha!) back before I had even heard the words “mast cell”.

The similarities are astonishing so I went back and looked at the list from the Mastocytosis Society and ticked off the ones I had before my diagnosis, just to remind myself how far I’ve come.

Here’s what it — I — looked like before my dx and rx (the symptoms I had are in red):

  • skin lesions or sores
  • skin rash, spots, redness
  • hives
  • persistent fatigue
  • itching
  • flushing & severe sweating
  • joint, bone pain
  • headaches
  • tachycardia (racing heartrate)
  • eyes tearing/dry, eye pain
  • persistent body/tissue pain
  • difficulty exercising
  • vertigo
  • episodes of low body temperature
  • unexplained vitamin B12 deficiency
  • scents/odors/chemical reactions
  • difficult menses (females)
  • numbness & tingling in face and extremities
  • skin feels on fire
  • unexplained anxiety
  • sudden drops in blood pressure
  • fainting
  • persistent diarrhea
  • vomiting
  • unexplained weight loss
  • cognitive impairment
  • sinus problems
  • chest pain
  • vision problems
  • hair loss
  • mouth sores
  • nausea
  • swelling & inflammation
  • odd reactions to insect stings
  • anesthesia difficulties
  • anemia
  • thyroid problems
  • decreased bone density
  • unexplained weakness
  • shortness of breath
  • sunlight sensitivity
  • temperature (hot/cold) sensitivity
  • difficulty with foods, drinks
  • anaphylactoid reactions
  • anaphylaxis
  • gastrointestinal pain, bloating
  • unexplained medication reactions
  • enlarged liver/spleen
  • liver/spleen/bladder/kidney pain
  • enlarged lymph nodes
  • frequent urination
  • recurring infections**
  • neuropathic pain
  • constipation (MCAS)
  • iron deficiency
  • unexplained bruising, bleeding
  • malabsorption
  • intermittent tinnitus or hearing problems

**had as a kid

So when I count that up I had 54 out of 58 symptoms listed and I did have recurring infections as a kid. I didn’t count that because I don’t get them now, but I do get seizures when I faint, but that’s not on the list.

My official number is — or was — 54. Fifty-four (!). I have gotten that number down to… let me count how many I had today…


Woo! 🙂

Of course I still get sick, but I do have days where I feel pretty great. Like today. I rarely have a day where I don’t have a stuffy nose or watery, itchy eyes or red, itchy skin or a few other combinations of symptoms, like today, but I am definitely doing much, much better.

I like to go back and look at these lists and remind myself just how good I have it, especially on days when I want to feel sorry for myself.

What about you? What’s your #??


xo Michelle Dellene

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