Feel Crazy but Also Very Hurty. Serronegative but high ANA, consistently Elevated CRP and WBC. Antiphospholipid antibodies, pitying edema, superclavicular swelling, Petetichae, and more. Sister died from this but I can’t get help. When to give up?
35 M 6’0” 190 lbs former smoker currently on no meds for diagnosis purposes prior service Marine infantry and construction worker . High ANA 1:1280 but seronegative other than the Antiphospholipid antibodies and a one time weak positive NPX2 Dermatomyositis result. Chronically mildly elevated wbc (12-20 with neutrophils high) and CRP of 1.5-5.0. Negative PET, CT’s, and ultrasound of neck lymph nodes. Negative whole genome
My Sister went through the pretty well the same thing for a couple years before passing from sepsis (or potentially a cytokine storm)
Mild to Severe pain in spine, hips, feet, shoulder, ribs, sternum, and collar bone worse when lying down and relieved with moderate activity. Memory and mood changes and constant lethargy.
Been to the Mayo where a periodic fever syndrome was suspected (TRAPS) but genome was negative and was told to follow up with home rheumo and wean off prednisone which I’ve been off for a month.
This has completely wrecked my life and is making it impossible to provide for my young family. After so many negative tests and lack of diagnosis I want to be done trying to get help but I can’t give up for my family’s sake.
If I could just get some opinions on whether or not I should keep trying ir accept that this is just what I have and will feel like forever? I have a beautiful wonderful Wife and 3 young children that count on me and I’m failing them.
Thank you for reading and I’d be happy to provide more details or photos to anyone interested.