In 1998 when I was 19. I went to Mexico my last couple days there I felt sick. The day I got back to the states I had a temp. of 104 and was very sick. When I went to the ER the doctor told me I got salmonella, which turned into kidney and bladder infection he gave me intravenous antibiotic. The next morning when I woke up the side of my face I was sleeping on was swollen. When I called the doctor he told me that it would go away, over the next month my face continued to swell all over especially my forehead, nose and chin.
Over the next seven years, they tested me for lupus, brain tumor, allergy tests and had many blood tests all negative. I went to specialist after specialist, was given lots of different drugs, biopsy and even had surgery where the doctor went in and scrapped under the skin. My face went back to normal (no swelling) a week later, then two weeks after that the swelling came back.
In 2005 I went to the mayo clinic where I was diagnosed with solid edema they tested me for environmental allergies and other rare allergies, came back with things like vegetable oil, SPF, plastic, carpet, mattress foam and glycerol. Only five pages of them. For treatment they gave me antibiotics and told me I would have to be on them for the rest of my life and that they wouldn't help but keep it from getting worse. They also told me I was the seventh person to be diagnosed in America, less then a hundred in the world. So I took the antibiotics only to have my face get worse. So I stopped them. I gave up going to doctors until I recently got pregnant and noticed my face getting worse, I have went to two and both of them just told me that they had no answers for me and told me to get back on the antibiotics. One doctor laughed in my face when I asked her what to do.
I don't know what to do and was wondering if in the last five years they have new information on solid edema of the face or if it could be a misdiagnose? Also how to find a doctor in my area that would be willing to look at different treatments?
Also I am having a hard time getting a job since my condition is so noticable. Is there any services that could help me get a job? I want to work at home so I don't have to deal with looks or stares, but can only find cons. My sister thinks I should apply for disability cause as she says, "There is no way your gonna get through the interview without a mask."
I have a BA degree and use to be so social. It's hard when you see yourself becomming a shut in. What else can I do?
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