If someone doesn’t know what they are doing, which Quest Diagnostics didn’t even know what test the doctor has ordered, so they had to call and get details from their main office, it can cause false negatives. My test showed as negative, but I guess there was a student that wanted to play with my urine, so more power to him and I hope he finds something.
My symptoms occur like this -
Usually having IBS issues 90% of the time; I get so hot, my glasses fog up and I start pouring sweat; cold sweats and chills; slight fever sometimes; my chest hurts from anxiety that creeps in and I can feel my heart beating out of my chest; severe SEVERE abdominal pain that is so bad, it feels like my body is being chipped and shredded to the point where it causes me to violently and repeatedly vomit; I become extremely confused; my heart rate and blood pressure skyrocket – like 176/113 I think was one of my highest levels; I have passed out here and there if waiting forever to get into a room at the ER; only pain meds (Dilaudid – 2mg about 3 times IV or IM, but IV works better or Methadone was used in a 10mg dose am – 5mg dose pm for maintenance to keep it under control) make the vomitting stop; and I become severely dehydrated quickly.
For good measure, here are the know symptoms of porphyria.
Abdominal pain
Anemia: hypochromic,
microcytic, hemolytic
Amenorrhea (absence or
suppression of menstruation)
Anxiety
Appetite, loss of
Back pain
Behavioral changes
Bladder distention
Bowel incontinence
Breast secretions
Breathing shallow or rapid
Carbo craving
Cardiac arrest
Nervous system lesions
Chest pain
Confusion
Conjunctivitis
Constipation
Corneal inflammation
Delerium
Depression
Diarrhea
Disorientation
Dysphasia (inability or
difficulty swallowing)
Extremeties painful
Facial hair, excessive
Fatigue
Fecal impaction
Gastrointestinal spasms Hallucinations
Hyperpigmentation
Hypertension
(high blood pressure)
Hypoesthesia
(dulled sensitivity to touch)
Hyponatraemia
(decrease sodium in blood)
Hypotnsion, postural
(decrease in blood pressure
upon assuming an erect posture)
Ileus (obstruction of the intestines)
Insomnia
Irritability
Jaundice
Joint pain or stiffness
Limb stiffness
Menstruation often
exacerbates symptoms
Mood changes
Muscle cramps
Muscle pain or stiffness
Nausea
Nerve palsy
Nightmares
Organic brain syndrome
Panic attacks
Paralysis, partial
Paralysis, temporary Paresthesia (numbness or
tingling sensation)
Peripheral motor deficits
Peripheral neuropathy
Photosensitivity (porphyrins
interacting with sunlight cause
neurologic and/or skin problems)
Polyneuropathy
Psychosis
Restlessness
Respiration, decreased
Respiratory paralysis
Seizures
Sensory disorders
Skin lesions, blisters or ulcers
Sweating, profuse
Tachycardia (heart rate of
over 100 beats per minute)
Tendon reflexes, absent or depressed
Tremors
Urinary incontinence
Urine, change in color of
(green, brown or red)
Urine retention
Urine formation, absence of (oliguria)
Vision, changes in
Voice, weakness
Vomiting
Weakness
Wrist drop
A lot of info on http://www.porphyriafoundation.com/ and https://www.facebook.com/spykenij?ref=tn_tnmn#!/groups/2445760941/. The facebook site has been extremely informative and the people, whether from a different walk of life or not, are all very supportive.