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Mastocytosis & Mast Cell Disorders Definition Signs & Symptoms Diagnosis Treatment Symptom Management Related Conditions FAQ
Signs and symptoms of Mastocytosis and Mast Cell Activation Syndrome are many and variable 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 (eg.skin spots, unusual lab test results, etc.) appear due to an over-abundance of mast cells either limited to the skin or 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 activation (ie. degranulation) with or without apparent or valid trigger. Things such as foods and drinks, extreme temperatures in water or air, emotional and physical stress - these are only a few examples - can trigger mast cell degranulation for these patients. If the patient has both an over-abundance of mast cells, in addition to having excessively active mast cells (ie. 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. Especially if diagnosis takes several years, the signs and symptoms escalate in type, severity, frequency and persistence, eventually leading to permanent disability or death. 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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