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Case Histories
Put Through The Wringer


     I am HCP.

     That is to say, that I have coproporphyria.

     For many years I had the symptoms and the medical profession put me through the mill.

     I had severe symptoms for nearly a decade and never once did someone say lets admit her and see what is going on. The medical community just kept testing every disease known to man. Every month it was more and more accummulating on medical bills.

     In addition to the numerous tests, and the accummulation of unpaid medical bills the doctors kept loading me up on unsafe meds. I must of lived from pure bullheadedness.

     Three times I nearly died. Twice I had hallucinations so bad it took days before I could regain mental stability and have the tremors and seizure activity subside.

     I have had so many shocks from EMGs that I am afraid to plug in an electrical appliance.

     Over the years I have had tubes put in every opening of my body. Up to the time of my confirmed diagnosis i had had five spinal taps, three mylograms, twelve gallons of blood drawn. On addition I had an appendectomy, my gall bladder removed, and a laproscopy. Moreover there were six CT scans, endless exrays, two MRIs, three endoscopries and two colonscopies and two barium enemas.

      Looking back through my medical history there were 14 times cited that it was suggested I have psychological evaluation. During the time before my diagnosis very visit to the various doctors I was considered psychological or as one said "just in my head".

     My self esteem went to zero. I was just about convinced that i was indeed making myself sick. My husband was in graduate school and I was trying to keep our home and family going. I had to give up my job outside the home because I was too sick to even get dressed some days.

     Sometimes I go get bitter just thinking back on the long pilgrimage to this point. However I know that I must remain strong, and be positive. My point of sharing you my story of porphyria is that no matter what happens in your own porphyria history, you are the only one that is going to understand what is happening to you.

     My husband tried his hardest to understand porphyria and finally he believed what the doctors would say, and felt that it was all psychological and that I was loosing it. He finally left. The children were confused by my one day being fine and the next day having seizures and having mental changes.

     My parents were in complete denial after seeing me go through a series of seizures and mental confusion. They placed me in a psych ward for observation. THe first day I was vomiting a lot and so they administered glucose and I improved within hours and spent the rest of the confirmation enjoying reading library books, talking with the nurses and offering to help with chores in the ward kitchen for something to do. After a week the psychiatrist assigned to me asked me about all of the symptoms, after he had finished my "mile high thick" chart. Then he asked me if I would do the "pee" tests and I did. The urine porphyrin was elevated slightly. He contented specialists who told him that it could have been from drugs or other causes for the elevation. However the psychiatrist knew that I was not mentally ill.

     I was sent home with instructions from him along with urine and stool containers for the next onslaught of porphyria. I knew the name now and he gave me photocopies of everything he had read on it. He said he wanted to prove that I was indeed physically sick and not mentally. He was 100% behind me and helped me with my self-esteem. Today he is a close friend to whom I call whenever someone doubts my illness.

     When the next attack rolled around I did the pee test and the stool test. I called him at the crack of dawn after the 24 hours were up. He personally saw the routing of the collection to the lab and transfer to the assaying lab at the Mayo Clinic.

     The next week I was awaken just before the clinic opened and it was this wonderful shrink. "Good news". "You are HCP !" We know for sure and you have validation." "Hold your head up high!"

     And so I did. I had to return to some of the original doctors who had claimed me psychological. One apologized and the other stood in disbelief when I handed him the test results.

     I was eventually lucky. However I have gone from acute to chronic and wonder if it would have been this way had I had early recognition of my diagnosis.

      So I was "put through the wringer" but not fly high and free with my validation and the knowledge of what I have and how to protect myself from further attacks.

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