The story of Sandra
I returned from overseas deployment in 1991 with fevers, chronic sinusitis, lymphadenitis and fatigue. Biopsy of lymph nodes demonstrated non-specific granulomatas tissue. Labs were all normal. I was diagnosed with fibromyalgia and chronic fatigue. Twenty years of a broadening symptomology and a steady decline in physical status were to pass where many different specialists (rheumatologists, neurologists, infectious disease experts, internists, cardiologists, gastroenterologists, allergists, etc.) could find no additional diagnosis and I was assumed to be a middle-aged neurotic female. After one particularly bad month of symptoms in 2011, I began to do my own intense research and presented my neurologist with a plan to order another brain CT to look for the presence of lesions assosciated with multiple sclerosis (MS). He rebuffed my suggestion as he was certain this was not a workable diagnosis. A week later, I saw another physician who ordered the scan and a week later, I confronted my previous neurologist with the results. After seeing several new specialists and having several new tests, along with several brain lesions noted on the scan, I had a diagnosis of MS. That was only the beginning. MS didn’t explain the additional inflammatory symptoms or blood markers. I entered the Veteran’s Administration healthcare system where an OBGYN referred me to rheumatology for a diagnosis of Relapsing Polychrondritis (RP). Since then, I have received additional autoimmune diagnoses and have been receiving excellent care through our VA system. Over the time period of 30 years I have been prescribed over 50 different medications in an effort to treat inproperly diagnosed symptoms. I have lost friendships, family relationships, career opportunities, financial freedom, home, mobility and socialization due to autoimmune disease and the long road to diagnosis and treatment. Still, most people have no understanding of the autoimmune disease umbrella. They understand cancer, HIV, alzheimers, and heart disease but very few understand anything related to autoimmune. Now I fight constantly to educate myself as well as others and I fight to not just survive but to also thrive. I fight for my daughters. I fight for all the others impacted by autoimmune disease. We must have much more research and funding must be broad as this “umbrella” of diagnoses is expaning rapidly and broadly. I personally believe there is a mass autoimmune spectrum occurring and we must understand its origin and look to noval treatments. In order to accomplish this we need to educate the world and gain research funding now!!