- CASE FILE
For 9 years, I’ve seen specialists who have told me my symptoms were psychological (ex; anxiety about my sexual identity) then autoimmune.
ABOUT THIS CASE FILE
I am 20. Since I was 11, I have experienced the following symptoms: seizures( which doctors said were psychological) syncope, drop foot ( which was diagnosed as conversion disorder) extremely painful peripheral neuropathy in my hands, feet, arms, legs, and back, hand trimmers, stomach cramps, migraines, insomnia, and brain fog. I have had MRIs, XRays, Cat Scans, blood work, EEGs, EKGs, video EEGs, and full Dysautonomia testing. I have seen specialists from some of the top hospitals and am continually diagnosed and misdiagnosed. I was diagnosed with asthma, Vasalvagal Syncope, non-epileptic seizures, and conversion disorder. I even went to therapy as I was referred for conversion disorder even though I knew this was not a psychological illness. I was finally diagnosed with Celiac Disease this past year and I stopped eating gluten. I was excited because my seizures stopped. I thought that was the answer to all of my problems, but all the other symptoms just progressed. I was then diagnosed with AAG, Sjogrens, and POTS by a cardiologist and neurologist. I took several different types of medications all through out the day ( every three hours) which upset my stomach. They sent me to get a lip biopsy test for Sjögrens and it came out negative. I was then referred to a rheumatologist who said not only do I not have Sjogrens, but I had no other autoimmune diseases. I felt like I was back to square one again and even questioning myself at times thinking this was in my head. I was once an athlete and a honor roll student. I had a college lacrosse scholarship and have never even been able to step on the field due to my illness. I am now flunking out of college and am walking with a cane. I have been fired from several jobs because of my syncope. One doctor suggested IVIG treatment. I did this and it worked. It was amazing. I felt normal for 4 weeks. Not only was I sleeping, remembering things again, and walking without a cane, but I was working out. I was pain free. However I am back to no sleep, being in constant pain, and feeling hopeless about my life because my insurance will not cover the IVIG treatments. I want to know exactly what I have so I can search for a treatment and even a cure so that no one else has to go through what I have gone through. This “disease(s) ” has robbed me of my adolescence and teenage life, I don’t want it to take the rest of my life.