RA but more.
Hi. Hats off to Rheumatology, complex! I’m Mary. 57. Diagnosed with seropositive RA just over a year ago. My Psychologist (PHD, decades of experience, specialization in chronic illness) says my childhood trauma was extreme. I’ve been on prednisone daily for two years and long tapers regularly the 18 or so months before. I wouldn’t have made it without my PCP treating my pain. The pain was mind altering in unexpectedly beneficial ways later but, that is another discussion. I would really appreciate any insight to kind of bridge me until I can see whatever Dr I need. Lol. Maybe help
me know better how to advocate for myself and in which direction? I have ADHD too. I can’t ever get to the point. Ok. I live in an enviable community in a lot of ways but medicine isn’t one of them. I had a gastroenterologist diagnosis me with gastroparesis last week. Waiting on biopsies for Barrett’s. I’ve lost 17% of my body weight in 6 months. I’ve not had much luck swallowing and then I just lost all desire to eat. Swallow study showed I’m a great swallower to the point that my throat is supposed to take over. Then I have some muscle issues. I don’t clear the food and it comes back up into my throat. I dunno. Lots of dysfunction. My temp is all over the place. I sweat very little and almost exclusively from my feet. Had ablation for PSVT in 2023. My heart rate is well over 100 just from standing up. This is all documented in my portal. They don’t need to take my word for any of it. But! My RA which caused some mild deformity in my hands before they wrangled it, is wrangled. It’s a Christmas Fucking Miracle. I developed antibodies to humira, switched to Enbrel, added methotrexate after three months and not much improvement, went up on the dose a couple of times and at 20mg once weekly, split. It happened. CFM. Started titrating off prednisone slower than I liked but then I got to 4mg and realized the wisdom in it. lol. I’m at 2.5 currently and the rest of me has kind of tanked. I hope it’s not because I just need steroids. I’m such a bitch since I started it. It’s all such a bummer. I want to jump up and down because it won’t hurt to do so but, I’d puke. Or faint. I won’t break, my bones look better than most healthy women my age! As I’m writing this my throat is fluttering. Would you say a neuro work up is indicated? Because otherwise I think psychiatrist is gonna be the next visit. I just don’t know what to think. But I think If I don’t, I might just slip through anyone’s notice. Did I mention the throttling? I am not rereading this, I will never send it. I hope it is somewhat coherent. I do very much appreciate this being allowed.