- CASE FILE
Facial & tongue swelling. Entire interior of mouth gets covered in white residue. Unknown autoimmune disease. Had it since November of 2015.
ABOUT THIS CASE FILE
Around July of 2015 I started having oral issues in my mouth. It started off as dry mouth and peeling of the gums. Over the course of about 4 months, it evolved into tongue swelling, gum and tongue peeling and bleeding, and I started having respiratory issues and my voice would go away, making it so I couldn't talk and barely eat. My mouth also gets entirely covered in white residue. In November of 2015, I was hospitalized for a week, as the whole side of my face got swollen, and I couldn't eat or talk. No doctor or specialist can figure out what was or is wrong with me, they say I have some sort of autoimmune disorder that is unknown. The ONLY thing that keeps my symptoms at bay is steroids, so I have been on Dexamethasone since November of 2015. At the time I started taking steroids, I weighed 120 lbs. I now weight 270 lbs, and my entire body is swollen constantly. My feet and legs look like balloons, and my whole body is covered in stretch marks due to the rapid swelling (arms, legs, stomach, etc.). In addition, it has caused horrible back pain and overall body pain, which has caused me to now be on Oxycodone as well for the past two years for pain management. I have now quite oxycodone due to not wanting to be on pain pills, so I now take Suboxone to manage my pain and to keep me off of opiates. I am only 28 years old, and this disease has taken over my entire life. I am in so much constant pain, and I have acquired what is called "moon face" and "apple stomach" from the steroids, so I feel as though I look hideous. People look at me weird, it is incredibly depressing, as I was happy, active, and healthy before all of this started. I have been soon by at least 10 to 20 doctors and specialists of all kinds, as well as seen at the University of Seattle. No one can figure out what's wrong with me, and no one has any idea what my disease is. I feel so unhealthy and ugly now, I just want my life back, please help! As long as I take the steroids, I my symptoms are almost entirely gone, but the side effects of them are horrendous. If I were to stop taking the steroids, my symptoms would come back in full-force within a couple days, and I would be straight back in the hospital. I would have an incredibly swollen tongue, my whole mouth and tongue would start peeling and bleeding, it causes a build-up of white residue in my whole mouth and in my throat making it so I can't eat, and it makes my voice go away, making it so I can't talk. This disease is horrid, and I don't even know what it is. I have suffered horribly for going on 4 years now, and there is no sign of improvement, and I don't know who else to turn to for help, as I have explored all of my options. I can't find one other person who has my disease, and no doctor has ever seen anyone with my disease, I am an entirely rare case, and no one knows how to help me. I am so scared that the steroids may one day stop working, and then what? I would be in the hospital on a feeding tube and unable to talk and eat, it terrifies me. This has ruined my life, please take a chance to help me, I have no one else to turn to as no one knows what I have or how to help me. Please help me.