Getting a Porphyria diagnosis
- tammyp5
- jasmine3
- robopeteco
- Denise82
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» tammyp5 - Porphyria
Has anyone else had trouble getting a diagnosis? Even though I had a family history of Porphyria, I could not get a confirmed diagnosis until I was 30 years old. I went through an appendectomy when I was seven, which turned out to be unnecessary. I was also diagnosed with ulcers, endometriosis, spastic colon and migraines. All of these turned out to be symptoms of porphyria instead of the ailments diagnosed. I'd like to hear from anyone who has had a similar experience.-- posted by tammyp5
» robopeteco - porphyria diagnosis
I've been searching for years for a diagnosis for all my symptoms. I've had dramatic skin changes in the past 2 years -- dermatitis and inflamed reddening of the skin on my palms and feet but also elsewhere on my body. Also, depression, hypogonadism, insomnia, intestinal problems, neuropathy, tremors -- the whole nine yards. It's all been worsened by the medications I've taken in the past 3 years for anxiety, depression and mania (diagnosed bipolar). These include lithium (10 years on a low dose), klonopin (nightmare getting off it -- actually tried to get off cold turkey -- what a mistake!), remeron, serzone, librium, neurontin. Also affected by carbon monoxide, mold, pesticide and other enviro problems around my home.I am bipolar but there's more to it than that -- my doctors have been dismissive and clueless. I am 45 years old, have twin 3 1/2 year old boys and am at the end of my rope. Need referral to a knowledgeable physician in the Bay Area. Can anyone help?
Thank you!
-- posted by robopeteco
» Denise82 - Re: Porphyria
In response to message posted by tammyp5:I also have been misdiagnosed. They say I havfibromyalgiaia,because of the chronic pain in my legs.I have severe lost of feeling, weakness. The pain has made me so depressed, always crying, I asked the Dr. to please help me. He thinks I need a psychiatrist and he always has his prescription pad ready. I told him I don't want pills, I need this fixed. I also had an attack at yrsrs. old, they removed my appendix. When I was 25, I had a full hysterectomy, because of the constanabdomialal pain.(never had children). Now I havscarreses on my hands and arms, lost most of my freckles on my face. It's gotten to now sometimes when I get out of bed in the morning, I drop to the floor. I'm getting sicker and no one seems to believe me. The reason I was finally diagnosed it was chance?. My Dr. was on holidays and this other Dr. (who was froafricaca) relived him for a couple of weeksAnywaysys hreconizeded it right away. Unfortunately he went back to Africa. Now I don't know what to do????
Denise82
-- posted by Denise82
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