my ana titer 1:1280 from recent tia, sinus infection, with no clarification on whether systemic sclerosis/polymyositis overlap which was dx 10 yrs ago then told conflicting dx since. i’ve had sjogrens since 40s and managed well with internist who knew i had seen 3 rheumotologist and frustrated. with tia attempted again, along with neuro. asked for test/scleroderma and 13 vials later have labs but another worthless rheumotologist that spent 5 mins on video before acting like she couldn’t hear me. she didn’t hear me intake/original appt with x-rays /labs and nothing followed through. nothing. shared dx of IRD and not wanting to further harm eyes with going blind. asked for short term option to knock down inflammation , functional approach with using adaptogens , herbs, decade now to manage pain, flare ups etc with exercise and liquid diet when needed nutrients. when asked on scleroderma dx clarification was told ‘ it’s not lupus’. i didn’t test and could return for additional. wouldn’t even refill basic d3, ibuprofen rx to reduce costs with $7 rx on both at higher dose than over counter. so frustrating to not be heard when you know your body and screaming for help - to be seen. to be respected that your intuition is valid and your not ‘crazy’. the look and eyes say it immediately when you know they are not the ‘specialist’. i have raynauds daily upon triggers, toes blue/blk daily has moved to knees from ankles in pain, swelling and vascular concerns left leg/knee and can’t breathe. last week was first patch of white shiny taught patch on bridge of nose. had immaculate care of teeth, last cleaning oct at time of infection / decay on two front receding JUST since flare. my body is attacking every part of my light. i’m tired. exhausted. medical discrimination at work fear losing coverage that in jan hit annual max and have coverage. (mri/mra /cta for 3-5 aneurysm scans by neuro ).
sorry for rant. some days i just can’t believe this is reality.
have vascular appt monday. internist april. has anyone had success with immunology vs rheumotologist? i’m trying to get answers to manage w internist/specialist goal and eliminate one size fit mentality of rheumotologist.
wishful thinking?
systemic s flare ? is more than i’ve managed with sjogrens flares.