I have been ill for about three months, but haven't received a definitive diagnosis. My treatment is limited by a rural setting and doctors who haven't seen or treated my disorder. I have read many medical journal articles on-line, and am probably more informed than my medical team. I was diagnosed with Porphyria Cutanea Tarda two weeks ago, however, I have more symptoms than should be present with this diagnosis. Along with the blisters (hands, face and elbow), I have acute gastritis, tachacardia, diarrhea (three months), severe appetite loss, weight loss of 15 lbs (12% of by body weight), tremors, constant headache and pain in my neck, systemic pain and difficulty sleeping.
I've presented to the local ER twice for treatment of symptoms. I've also presented at my oncologist's office twice for directions on what to do. Today they said that he'd call me when he has time. I'm very frustrated and feeling like I'm not being heard.
They have done a punch biopsy of my skin and sent off for elaborate blood testing, which was done on 8/31, but doesn't seem to be back yet. The punch biopsy was positive for Porphyria.
Does anyone have any suggestions?
Winne
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Porphyria of some variety
- By winnie
- Posted September 10, 2007 at 1:35 pm · 2 replies
- In Getting a diagnosis
- Shared with the public
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- By foreverinbluejeans
- Posted July 7, 2009 at 1:04 am
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Sometimes when you have one rare disease you have other disease conditions going on. Stress may be causing some of your problems like sleep, head aches, and pain. Practicing stress reduction may help.
- By bren311955
- Posted June 23, 2009 at 9:33 am
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My interest in porphyria is because I have a friend who was diagnosed with it last week. For the past year he has been in and out of hospitals and emergency rooms. One of the ER's actually told him to go home and sleep it off. His mother died many years ago from this disease and its complications and he also has a son with it. Trying to find out anything about this disease that is "etched in stone" is very difficult; I guess because there are so many variations on it and there is still so much to be learned about it.
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