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A Life Long Journey of Misdiagnosis

Is what I have written a history, or is it histronics?
I don't know, but it is the ""story" of my illness.

"You were a ten-month baby." "You have a microscopic bug eating your skin."
"Your symptoms are of shell shock/battle fatigue/post traumatic stress disorder."

These statements were attempts to diagnose a persistent skin disorder.
When I was an infant I was wrapped up tightly when out in the sunlight as I blistered so quickly. That condition ceased when I was about six months old. (Any connection between my being nursed by a porphyric mother?)

As a young child and adult the skin on my fingers blistered, oozed and got infected. The treatments included soaking my hands in boric acid, potassium permanganate, and other solutions, dressing them with lanolin, cortisone and other salves, exposing the skin to low-level radiation, being prescribed beta blockers and tranquilizers, and my wearing rubber or plastic gloves and/or copious bandaging to hide if not relieve the condition that disfigured my fingers and handicapped me in many areas of my life.

With each of my five pregnancies the symptoms disappeared only to return when the infant was weaned.

After I finished menopause my skin healed completely. (Hormone connection?)

"Extreme abdominal pain with no discernible physical basis.""
"Constipation." "Food allergies, especially milk products." "Dishwater diarrhea."
These statements were attempts to diagnose persistent and recurring abdominal pain and nausea problems.

Treatments included upper and lower GI's, sigmoidoscopies, colonoscopies, a colonostomy and resection, hospitalizations, tranquilizers, various digestive aid products, and my avoiding cows milk products.

"You have a depressed frontal lobe, but after three years of appointments and prescribing medications, I see no improvement and must discharge you as a patient."

"Overactive adrenaline system." "Classic manic depressive symptoms."
"Paranoid Schizophrenia" "Thyroid malfunction."

"You need female hormone replacement therapy with an emphasis on progesterone."

"You have an unexplainable physical malfunction problem you must learn to accept and live with." " I haven't the faintest idea what is causing your depression."

"After a year and one half of working with you, I am pleased to say that you are now at the highest level and you no longer need to come here for consultations." [Four days later I attempted suicide and was admitted as a paranoid schizophrenic for a long psychiatric hospital stay and two years of outpatient psychological counseling and tranquilizer prescriptions]. "You are a mental case, you must see the psychiatrist here (a major HMO), and I don't want you to come in here to talk about your mental problems for another six months at the least.
A cold, the flu, a broken bone, make an appointment, but otherwise you must go to the psychiatrist."

Those are samples of statements made by the physicians that I consulted with over the years and that were made in response to my extreme and recurrent physical and psychiatric disorders.

Testings included waking and sleeping EEGs, two MRI's, and one C.A.T. scan (results of all these tests were normal).

Medications included an enormous variety of tranquilizers or anti-seizure meds. Self-prescribed alternative treatments included prayers and acupuncture.

Only the prayers had the life-saving result. They led to a diagnosis that explains the nearly 67 years of misery and mistreatment I had experienced to that point in time.
Those prayers, I think, caused a woman to discuss my symptoms--which I had told her as I did everyone I met (in the hopes that someone would know how to help me)--with her retired-physician husband, who came up with the exactly correct diagnosis: Porphyria.

Testing of my blood, urine and feces when in attack and research via the Internet revealed what should have been obvious to physicians in the past, that my symptoms: blistering skin, severe abdominal pain, and cyclical constipation, urine retention, and neurological/psychiatric problems (in my case, extreme terror and depression) are variegate porphyria symptoms.

Several years ago I had the cyclical complaints only two or three times a year or so; now they occur every two to three weeks.

Medical texts report that the condition is rare, autosomal, and genetic. There is a 50 percent chance one's offspring will inherit the disorder.

It is rarely thought of when physicians are attempting a diagnosis for such symptoms, including the mental disorders.

It has been estimated that one out of every 300 mental patients has some form of porphyria (there are 8 basic types and a few variants). King George III, portrayed in the movie "The Mad King of England", perhaps suffered the type I have.

Porphyrias are a malfunction of the liver due to the buildup of porphyrins that are caused by the heme production's missing or have too little of certain enzymes used to produce red blood cells.

While porphyria is not necessarily life threatening, many persons have died because their symptoms were not treated correctly (such as having physicians performing exploratory surgery to determine the cause of abdominal pain or lower intestine convolutions - as happened to my grand-aunt), or the patients were given medications that are dangerous for people with porphyria as happened to my grandmother and my mother, both of whom had "mental problems" for which they were prescribed the tranquilizers of their time. They experienced serious side effects, however, and could not take many prescribed medications.

There is no cure for porphyria. Treatment is generally dextrose IV administration and in some cases hematin. Symptom reduction/avoidance methods include a high carbohydrate diet, avoiding alcoholic beverages (especially red wine), grapes, raisins, garlic, and tomatoes and other sulfur/sulfite containing vegetables (and eggs), cruciferous vegetables, and for me, absolutely no food product that has/had a heart. That means no beef, chicken, fish, lamb, etc., because the food given to animals in the US to help them grow faster and larger causes me to become ill when I eat those meats, especially if the meat has been treated with sauces containing sulfites.

The danger for the porphyria patient is misdiagnosis and improper medications. All tranquilizers and anti-seizure medications, most blood pressure and hormone replacement therapies, for example, must be avoided. They are poison to the liver.

The patient's urine, blood and feces must be tested during attack to determine if there is porphyria and the type thereof. There can be false results, however, as many labs are not equipped to conduct the testing, or the patient's form of porphyria is not exactly in the lab's diagnostic repertoire or the samples do not meet some arbitrary standards for diagnosis.

There are research projects underway in all parts of the world, but reliable testing and treatment are still only hoped for.

Information about the American Porphyria Foundation, Cure Porphyria, Porphyria Educational Services and other groups, and books, medical journal citations and other information can be located on the nternet--which is where the patient is advised to gather data to use to educate his/her physician.

The retired NY physician who diagnosed me saw only two such patients in his entire career; the physician I am now seeing has had only one other porphyria patient.

I am relieved that I now have a diagnosis, I look forward to the day when I can have symptom relief, also.

My email address is I cannot promise anything particularly enlightening to anyone contacting me, but I would be interested in forming a support group in the Orange, County, CA, area.


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