Hi! I'm new to this site, but not the illness. I'm 39 and have been ill all my life with systemic connective tissue problems like, vasculitis, Raynaud's, Sjogren's, GERD, a severe motility disorder that the doctors say is related to Scleroderma, Iron-deficiency Anemia, B-12 Deficiency, Osteoporosis, lupus-like symptoms- rashes, joint pain, swelling, fever, fatigue & cardiac symptoms- tachycardia and PVCs, along with surgeries on both elbows and right calf due to tendons tightening and tearing...It goes on and on, as you all know!
My problem is that I do not have a positive ANA result. Whenever the doctors have done the various lab tests, they are within normal limits, except for SED rate, RBC, & WBC & Iron & B-12. So, I have never been given a real diagnosis. I was first told, when I was 8, that my body was reacting to stress (my fevers & pain were imagined), then, when I was 14, I was told it was Still's Disease and I would grow out of it. Then, when I got vasculitis and a butterfly rash, it was Lupus. Next, it was Undifferentiated Connective Tissue Disorder, then it was MCTD, then it was maybe Sarcoidosis (as I have Granulatomous Liver Disease- also non-specific diagnosis), and now no doctor will take responsibility for me, because no real overall diagnosis has ever been made.
Last year, I lost 25 pounds in 3 weeks, for no apparent reason, and had periodic episodes of vomiting that could only be stopped with IV drugs at the ER. It took 6 months of my pushing to get the doctors to look into what was going on with me. Finally, I was given a breath test and found out I had SIBO (Small Intestinal Bacterial Overgrowth) due to my GI Motility Disorder. So, I was put on an antibiotic, Zelnorm, and a liquid diet and told it was Scleroderma by the GI doctors at Shands. But, my rheumatologist is not convinced it's Scleroderma because of the lack of evidence in my labs. I am still losing weight and having more issues because of the motility disorder- It took a year of convincing my rheumatologist and a bone marrow biopsy to determine that I have no iron! I am now getting IV iron infusions once a week along with a weekly B-12 shot. My Raynaud's is much worse, and I'm on Procarida XL for that. Also, my teeth are literally disintegrating. I've had 3 decay and abscess in 3 months, and I never had issues with my teeth.
So, I have all the sickness, and yet I cannot actually classify my disease. I can't even say that I belong to this group, because most everything I've read here says that I must have a positive ANA result in order to rate! I have been sick my whole life, but SOOOOO much worse this last year, and still, I can not find an answer. So, if anyone has any input, or can direct me to some resource that I can use to reference for my next doctor appointment, I would be eternally grateful!
Thanks in advance,