Thank you for sharing Ruth balbirnie another Tiger from Ireland
Thank you for sharing your story. My story began along similar lines at first, althougth not quite as severe. My vaginal ulcers also began monthly at age 13, and were so bad that my labia would be so swollen that I could not walk and I would have to stay home. The doctor never tried steroids that I remember, but maybe he did, I remember there was some kind of ointment my mother had to put onto the ulcers for me, a lovely experience for a 13 year old right there, so that it was exactly on each sore. I do remember that I had this happen for a full year, this was the 70's, and finally the doctor told my mother if it happened again he would be forced to hospitalize me and just like that it weirdly, at least the vaginal ulcer part, went into remission, until I gave birth to my second son a few months after his birth, when I was 31. But during this time I still experienced mouth ulcers, bouts of extreme fatigue, and joint pain that my parents would brush off as whining, and my older family doctor was not connecting the dots in this puzzle. No one was thinking that an autoimmune disease could be a possibiliy. I also had severe depression all thIrough high school, college, and the beginning years of my marriage in my young 20's up until my daughter was born, and in becoming a mother I chose to save my own life in order to be the best mother I could be, and finally allowed my husband to take me to a psychiatrist, despite my fears and the cost. The antidepressant that finally worked, Remeron, after several ones that failed for different reasons, changed my life. Not only did it help my depression, but it allowed me to finally get consistant sleep, which was a huge help with my fatigue and joint pain, obviously, right there, so I had a few wonderful years with my husband and daughter. Then when my son came, one Sunday morning I came home from church and collapsed on the couch for a nap. My son was seven months old. I woke up 12 hours later, and I woke up 12 hours later and have never been well again. It woke up the monsters of what is now four autoimmune diseases, the Behcet's, which my ob-gyn became an expert in by spending sleepless nights online scouring medical journals looking for answers as to what might be the cause of my newly awakened vaginal and oral ulcers that were so bad she had never seen anything like them. And before that my rheumatologist was already looking for answers for my severe joint pain and fatigue, and intially diagnosed me with rheumatoid arthritis, and I went through Imuran, Remicade and plaquenil and of course, prednisone. He added a young partner to his group, and she thankfully became my doctor, and has been ever since. She realized that I am allergic to Remicade and she changed my diagnosis to lupus, and tried Rituxan, which I was one of the first patients they tried Rituxan on to treat. She is very knowlegeable, and very kind, and she also is very thorough in researching new treatments and trying them. She finally sent me for a second opinion to the University of Pennsylvania Hospital's Rheumatolgy department for a second opinion, and that rheumy gave me a diagnosis of Mixed Connective Tissue Disease along with my Behcet's. My rheumatologist then started cellcept, which along with prednisone has got my labs under control for a good five years now. Before that, with the Imuran and with the Remicade, and I had also done a stint with Cytoxan as well, I forgot, I have been hospitalized with kidney failure three times, and once both my white and red cells dropped into such dangerous territories in the hospital under neutropenic precautions with infusions My liver enzymes have been pretty high before, and I had a time where I had autoimmune hemolytic anemia, where I had to have a series of IV iron infusions. But now with Cellcept my labs have been clear of that stuff for years. But last year and this, I have gained both rheumatoid arthritis, officially this time, with a real positive rheumatoid factor, not a "zero positive" and also a Sjogren's diagnosis. I also have fibromyalgia, with all of this, gastroparesis, long and short fiber neuropathy all over my body, and Type 2 diabetes. My teenage son says I collect diagnosis's like bottle caps. Over the last two years I have developed a new collection of neurolgical symptoms: memory issues, confusion, intense bee stinging everywhere, falling asleep instantly, dreaming while awake, and this awful ice water feeling inside my head that actually feels like icy liquid sloshing around inside in there that is quickly followed by icy feelings up and down my muscles in my arms and in my body. I also passed out for an hour in our bathroom. And I have been having a constant weird tension/tightness in my head and neck. This has gotten so much worse since just May that they are finally doing a lot of tests this month, and it is very scary. I am also getting a wheelchair just for when I need it, sigh.