Not Knowing Was The Worst
I was diagnoised in 2007 but symptoms began in 2005. I went to an ENT because i could barely breath through my nose. After the standard blood work he found nothing, my doctor was convinced i was mutilating myself because there was no way my nose was scarring together by itself. I was determined to prove him wrong, I could not walk a way from a doctor that thought i was hurting myself. I was surprised he kept seeing me, it was frustrating. He sent me to an allergest which took a while to get in, the allergist called in him a panic and told him that he believed my nalsal passages were 95% obstructed, meaning i was breating through little pin holes. I had surgery to remove the scar tissue, which as you already guessed made it 10x's worst. Those things they leave in your nose after surgery had to be taken out asap because my skin just started growing around it. I became depressed and still am. It wasn't til a year or so later that I started to get oral blisters in my mouth and a light bulb went off in my doctors head. He still didn't know quite what it was so he sent me to a Dermatologist who told him about Pemphigoid, he still did not believe that is what it was, being that I am black and at the time 32 years of age, (which means nothing in the world of Pemphigus/Pemphigoid). So he relunctantly did a biopsy under immunofluorescence and finaly i got the diagnosis and apology I had been waiting for. I lost my insurance for a couple of years after being on Rituxan and IVIG for over a year and sadly been out of remission ever since. I just started cellcept last week and looks like my doctor is getting aproval for Rituxan to go along with it. I believe this will work.
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