The very confusing world of autoimmune diseases
I am a 44 year old RN…I have not been told that I have RA by a Rheumatologist, but my positive RA factor and symptoms and my primary MD all let me know that I, do in fact have it. (I went to 1 Rheumatologist that tried to tell me that she was interested “to see what this turns into” and give me the preliminary diagnosis of fibromyalgia…) I said that all these things indicate that I have RA, including family history as my maternal grandfather had severe RA…very evident by looking at his hands. On the other hand, my paternal grandmother had lupus and my father died of Hogkin’s Lymphoma…I have at signs and symptoms of just about every connective tissue disease known…I’ve had a positive ANA, non irritated chest rash that gets brighter in the sun, discoid lesion on my wrist and chronic kidney problems. My sister has been diagnosed with undifferentiated MCD with scleraderma being the prominent disease and my brother had a positive ANA and a positive DSDNA indicating possible lupus…I took him to a Rheumatologist and he walked into the room and said “What are you doing here?” I explained that the primary MD said that his blood work showed that he might have lupus and to go see a Rheumatologist…he said (to my brother) “You don’t have lupus” and walked out of the room…I looked at my brother and said “Wow, I thought we were going to see a doctor, not God; you must be feeling so much better now that he has cured you.” He never looked at a lab, ordered a test…nothing. I was apparently foolish and was honest with my employer about my health issues and was terminated and now have no insurance. I have been in a flair of what ever this is for months. My actual symptoms include: 1. severe fatigue 2. tendon and ligament pain in ankles, knees, hips, elbows, wrists 3. fingers that feel like they have been smashed with a hammer and are beginning to twist and disfigure and tendonitis in my wrists 4. periods of intense brain fog (this is why I can no long work as an RN, unless whatever treatment I eventually end up on is a livesaver), 5. severe memory issues 6. dry eyes, nose, mouth (severe)…yes I know the sj….whatever syndrome 7. stiffness 8. back and neck pain that crunches and grinds with “mild” DDD per my MRI (after a month with a chiropractor and an investment in an inversion table) 9. nodules developing all over (fingers and hands, back and neck) 10. permanent red rash on my chest without itching or irritation, that gets darker in sun 11. round discoid rash on left wrist 12. frequent sinus pain, pressure and inflammation and infections (had sinus surgery for deviated septum and such…the dryness causes irritation witch causes inflammation witch causes infection…pain, pressure in eyes and ears 13. chronic urinary tract infections with noted sensitivity to yellow dye #5 (these are atypical with the only symptom being such severe fatigue that I can’t get up off the sofa) always many WBCS in urine 14. frequent swollen glands 15. intimate relations cause BV 16. organ inflammation… inflammatory feeling around heart (gee should have had an echo when I had insurance…) and sharp intolerable pain in the area of my right kidney 17. severe constipation. Then, of coarse there’s the depression…who wouldn’t be depressed…I think I have overlap…Celebrex helped with the pain…no insurance ….so now just on ibuprofen, antidepressant and thyroid meds and I was most likely misdiagnosed with adult onset ADD…but the meds helped some of the worst symptoms (fatigue and pain) so I took them for several years and now can no longer afford them…it was the brain fog I think. I read interesting articles on brain fog…some people are trying to blame medicines…I haven’t taken biologics or steroids or anything other than ibuprofen and Celebrex and that symptom developed years before the Celebrex, so it is NOT THE MEDS!!! My triggers are: yellow dye #5, stress (any kind) and barometric changes in the weather (that I have noticed) I have suffered untold issues from this illness: (lost jobs from running late due to stiffness; felt such intense sinus pain/pressure that it felt like I had a concussion; constant misery from pushing myself to try to function in a demanding and fast passed world; left my husband; had a tubal pregnancy after having my tubes tied that caused severe fibroids and other problem, spent a fortune on my decaying teeth (dry mouth)…) I look healthy and people expect me to act like a healthy person…) I understand a lot about the way the human body works and would love the opportunity to help research connective tissue disease and any, ANY insight as to what specific illness (illnesses) this actually is or how best to treat it or even treat specific symptoms…like through my sister, I found that a nasal emollient soothes my dry sinuses and reduces the number of sinus infections.
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