Signs and symptoms of Mastocytosis and Mast Cell Activation Syndrome are many and varied per patient.  Idiopathic Anaphylaxis patients experience many of the same symptoms, have few if any signs or indicators to explain their illness, but their dominant symptom of anaphylaxis persists.

The signs are caused by an over-abundance of mast cells either limited to the skin, internally or both.  The symptoms occur when mast cells are triggered to degranulate.  

Mast cell degranulation is a normal response of the immune system trying to protect the body.  However, these disorders trigger mast cell degranulation with or without an apparent or valid trigger.  Things such as foods and drinks, extreme temperatures in water or air, emotional and physical stress (to name a few) can trigger mast cell degranulation for these patients. If the patient has both an over-abundance of mast cells and excessively active mast cells (i.e. degranulating when they should not), then the symptoms and illness become more severe, prolonged and life threatening.

Some patients experience only a few symptoms, some experience many, some have all of them at various times or persistently. There is no way to fully predict what each patient will experience.

Initially, only a few signs and symptoms may be present.  Often the signs and symptoms may escalate in type, severity, frequency and persistence.  Listed below are 58 signs and symptoms reported to us by patients consistently over the past 10 years.

  • 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
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