- CASE FILE
Surviving, not living, until you can’t tell if you’re still surviving.
ABOUT THIS CASE FILE
I’ve lost track of the countless doctor appointments, tests, dashed hopes. I’ve given up a full time career, gone part-time and can no longer pretend I’m succeeding still. It’s been years (perhaps 4?) since I went out with a friend—even to lunch. I don’t have friends anymore, I’m too tired and out of it. Now my relationships with my family are suffering, I’m doing everything I can and still falling short at work and at a life. I’ve been misdiagnosed as lupus for a year, told I have one thing and then told no it can’t be that. Diagnosis’s have been dangled in front of me like carrots, only to be dashed away because I only meet 8/10 statistics of a disease. I’ve realized if the answers not right in front of them, 95% of doctors say “oh well—deal with it, you have Crohn’s that’s probably it”. This is no longer fair for my family, I need help for them.
I have upper right abdominal pain that no one can diagnose—I have scatter artifact from hardware in my spine that blocks out that entire area. I have sinus tachycardia where sitting I am 55 bpm but moving at all will take me to 140 bpm. I have become very weak with significant back pain. I cannot concentrate. I have elevated cortisol and aldosterone with lateralization to my left adrenal gland (adrenal vein sampling). I have an undiagnosed type of neuropathy in my left leg that showed up on a three phase bone scan. I have complex migraines that showed up on a MRI of brain. I have had Crohns Disease since 2003. I have had Endometriosis since 2006. Other than elevated cortisol & aldosterone, only abnormalities of bloodwork that have ever shown up are elevated MPV, low RDW CV, low potassium, high chloride, low anion gap, sometimes ANA and antiDNA. I am a carrier for hemochromatosis and occasionally my ferritin is high. I am exhausted beyond reasoning, my heart is constantly pounding, I hurt all over like I fell down the stairs. My vision goes dark when I stand up from sitting or lying down. My left leg goes lobster red when I’m hot, burns and aches. I have no heat tolerance—I sweat all over, get weak, dizzy and nauseous and recently have no cold tolerance. I am extremely irritable. I had the “Cushing look” in fall of 2017, looked like I was on high doses of prednisone however I have lost some weight but believe it’s muscle. I have been to three physical therapists, have tried spinal injections for right upper pain. I have had my OBGYN look for endometriosis in upper abdominal and just found lymphoid aggregates but she did not know if that was of any significance. Normal HIDA scan, normal endoscopy.