I am a mother and proud grandmother. I am dying and my family all knows about it. I took ill in August 1998. I thought I had the flu really bad; it lasted more than a week. So I made an appointment to seek help from my doctor. He told me after extensive testing I had two diseases—MS and Lupus. My jaw hit the floor along with my tears, but the worse was I thought my world was then at the end. How wrong could I have been?
Two weeks later, my eyes started giving me problems. I thought I had belphtitis (mucus or cold, as some lay people call it), but it got worse in three days. So I went to my ophthalmologist and he said, “I think you have a disease called Sjogren’s Syndrome. It mimics a lot of diseases and to make sure you need to have an ANA Panel done.” This is the most expensive blood test ever. The normal cost is from $500–$1000 dollars. Well, I bit the bullet and paid for it one month later. My family doctor called me, and I knew something was wrong when not the nurse calls but the doctor. He told me he needed to see me that day in his office. I went.
First, he apologized to me by stating he had misdiagnosed MS and Lupus. I had Sjogren’s Syndrome. He was terribly sorry but there is no cure. I asked him, like any other person would, how long…. He said that each patient is different but all the patients he knows that have passed did so from pneumonia. It gets into the lungs causes COPD and then death…. I am writing to you all in great pain because this disease mimics fourteen diseases: MS, Lupus, Epstine Barr Syndrome, Mono, Chronic fatigue, Fibromyalgia, Rheumatoid Arthritis, Arthritis, Birthsitis, Asthma, Bronchitis, essential tremors (Parkinson’s), Blood disorders, Belphtitis, nerve disorder.
Because of this, I have started a cause on my Facebook called Stop Sjogren’s Syndrome. The Arthritis Foundation of St. Louis is taking up my cause along with the Cancer Society. I wanted you all to know this cause because a lot of people are misdiagnosed and I am one of forty thousand fighting for my life. It is slow and painful but I have no regrets. I am a Proud Native American Indian Mother of six, 5 of whom are living and eight rewarding grandchildren so far. Please help me live and visit my cause. Thank you. Oh, I am fifty-two years of age.