- CASE FILE
Progressive Vasculitis with Brain Involvement
ABOUT THIS CASE FILE
My health issues began when I was a baby. I was diagnosed with Asthma and have had breathing issues my whole life. Currently, asthma is the least of my problems. As a child I struggled with skin issues that were diagnosed as Eczema. While I was in college I would develop frequent respiratory and sinus infections. I also had episodes of swelling in my legs and feet that left behind bruises that were later diagnosed as Purpura. After college my nose was frequently runny and congested. Constant nasal drip would cause frequent sore throats and irritation to my vocal cords. Constant runny noses and nasal congestion gave way to burning pain sensations in my nose and sinuses. Sometimes the burning sensations in my nose also led to headaches and uncontrollable tearing of my eyes. I then would have episodes of uncontrollable nose bleeds followed by bloody nose. I frequently have scabs inside my nose. A year before the nosebleeds began I developed growths on my right hip, back, and stomach. They were eventually diagnosed as granulomas after biopsy. My gums began to sting and bleed. After different doctor changes and seeing 2 different Ear, Nose, & Throat specialists, I was referred to a Rheumatologist. I had biopsy specimens sent to Johns Hopkins and monthly lab work. Prednisone was the only medication that was helping. My lab results were inconsistent and the Rheumatologist diagnosed me with a Vasculitis but was unsure which one I had. I was put on oral treatments of methotrexate and began to suffer with oral sores, dry skin, lesions on my skin, and extreme fatigue. I met with a rheumatologist at Massachusetts General Hospital. After reviewing all of my labwork, imaging, and biopsies, I was diagnosed with Wegeners Granulomatosis. I was then put on Rituxan IV infusions to further suppress my immune system. It took several years to get the diagnosis and since then the disease has caused more issues. I have 2 new growths on my scalp and my doctors are unsure if they are granulomas. The disease progressed into my brain and caused damage to my pituitary gland. I developed meningitis that took over 2 months to overcome and a new rare disease, Diabetes Insipidus. I have also suffered a TIA (mini stroke) and now I’m at high risk of additional strokes. Recently I developed extreme neck pain that has progressed into my right shoulder and arm. It has restricted my ability to drive, bend over, pick up anything, and sleep. My doctors are unsure if it is related to my autoimmune disease or something different. In addition to the brain involvement, I have had permanent damage to my inner ear and progressive hearing loss due to my autoimmune disease. At times my ear feels muffled and painful and I’m unable to release the pressure (like when your ears pop on an airplane). This disease eventually causes lung, kidney, and heart failure. I’m younger than the average age of individuals diagnosed with the disease. Even though I know I have Wegeners, it is causing new issues/illnesses, and I hope to use my story to educate and help others.