- CASE FILE
Suffering from anaphylaxis for over 10 years. Nerve pain, asthma, brain fog and memory loss have badly affected me. ANXIETY thru the roof!!!
ABOUT THIS CASE FILE
I started getting sick in 2008. I was getting ready for work for the day and I started to get these intense cramps in my stomach. I ended up in the bathroom with diarrhea and throwing up. Then my whole entire body broke into hives as I sat there sweating. We had to call 911. They told me it was an allergic reaction. To what? They didn't know. Throughout the next 5 years I started to have a lot of these episodes. They had no idea what was causing these allergic reactions, so they labelled it IDIOPATHIC ANAPHYLAXIS. I was tested for EVERYTHING- colonoscopy, endoscopy, abdominal ultrasound, blood work, skin biopsy, 24 hour urine samples. I was tested for Lyme, Lupus, Celiac, a tumor. I had every single allergy test I could get. I went from doctor to doctor, specialist to specialist. In 2012 I was diagnosed with MAST CELL ACTIVATION SYNDROME. It certainly explained my bad breathing/asthma, my anaphylaxis and my constant hives. But I still thought there was more to it. I tried to overhaul my life with eating better and exercising and I actually put my illness into remission for 2 years. Then everything changed on November 5, 2015. I was driving in the car with my soon to be 5 month old son in the back seat. And I suddenly went into anaphylaxis while behind the wheel. I even had a new symptom- my hands were basically paralyzed. I rushed to the nearest thing I could see- a children's hospital right before my son's pediatrician office. I went straight to the bathroom and next thing I knew there were nurses rushing in to help me and administer Epi. Ever since that day, I have gotten worse and worse. I have hives daily, despite being on Xolair Injections. I have awful brain fog and memory issues. I get ulcers on the roof of my mouth and into my throat. I have constant diarrhea and nausea. I am always cold. I started to get dizzy and noticed my blood pressure would get strangely low as my heart rate would get oddly high. I went through autonomic testing and was diagnosed with a form of dysautonomia called SMALL FIBER NEUROPATHY. I get pins and needles in my feet, legs and hands. I have days when my whole entire body is in pain. I get terrible headaches. I have unchest pain, cysts on my vagina and recently under my armpit and on my nipple. My tongue and gums will swell and bleed. Every single time I have stomach issues and hives I get crazy anxiety and feel like I may end up having anaphylaxis and not making it. I have been on social security disability and have been out of work since November 5, 2015. I am attached to a toilet and always need to know where my closest ER is. I stay at home with my two sons- Wesley (4) and William (2). Some days it is really hard for me to even get out of bed, but I keep pushing myself. I feel like I have more wrong with me and they just haven't figured it out yet. I feel horrible that my kids have ridden in ambulances with me and know to get my phone when I am sick in case I need to call for help. I just want to be healthy again. And to feel "normal". I miss working and being productive. I miss my brain functioning the most.