- CASE FILE
Mystery Life Threatening Illness
ABOUT THIS CASE FILE
I have been relapsing for years with a mystery illness. I had been a full time athlete my whole life, but have had health issues since very young. Issues when young were similar and include lichensclerosus diagnosis at a young age, but was also required to use breathing treatments for years and would have similar digestive attacks. I almost lost my leg at age 20 to undiagnosed disease as well. My case was sent to the chief of aids and hematopathology, but at the end still no diagnosis or follow up tests were performed. Only suggestions were, potentially Lupus and Vasculitis with chronic and acute lymphadenopathy with necrosis because there was evidence of chronic inflammation and chronic inflammatory cells in the necrosis. All other infectious and viral tests were negative. For the longest time doctors thought I might have Crohns because of severe diarrhea since childhood that flared worse in 20’s and I tested blood positive for Crohns, but I have had multiple endoscopies and colonoscopies, all negative biopsy results for Crohns. It happens the same way every time. I wake up at 5 am out of nowhere and start cyclical vomiting. I then turn jaundiced, and run very high fevers with pain in right upper quadrant that radiates to my middle back. The vomiting is very severe and goes on all day and night and I have to wrap up in blankets for the fevers or lay on the floor. I have been hospitalized many times with no answers. Because I am undiagnosed though and nothing shows on images, I am often sent home and what feels like left to die. The last relapse because it was left for so long I started going into heart failure and was heading towards coma. I was 90lbs by the time I received surgery. A civilian surgeon my last relapse saved my life, but even afterwards it continued. He suspected I had gallbladder stones or sludge that had been missed on imaging, but when he went in found something entirely different. My entire lower right quadrant of abdomen was inflamed, but no signs of appendicitis or Crohns. I had not had prior abdominal surgery, but they said they had to cut down abdominal adhesions from my Biliary organs and abdominal wall just to get around. They conducted a cholangiogram which showed luminal irregularities in my common bile duct and they could not move the catheter through my cystic duct as it was strictured. The cystic duct was then cut and clipped and they removed the gallbladder. No sludge or stones were found at all and he said the gallbladder was not the cause that my organs were inflamed and my gallbladder was an innocent bystander lost in the disease process. My direct and indirect bilirubin had both been high prior and went down a little after operation, but continued to remain elevated 6+ months after surgery which also baffled doctors. My lymphocytes were low and my wbc count was high when initial event started. My c3 and c4 were both borderline low, but no positive Ana. Low igg subclass 4. I had levels of 4.0 on my Primary Biliary cholangitis test 6 months after surgery, but I had extrahepatic duct involvement during operation so was left undiagnosed because they thought I was Primary Sclerosing Cholangitis which came back negative. Because I showed signs of one but had levels of the other I was left undiagnosed. 6 months following the surgery I could no longer walk. I had to use a wheelchair and walker for about 6 months for anemia that was left undiagnosed for too long. Once I had iron infusions I regained my ability to walk over time. During the time of being able to walk again I had a repeat of pbc test which showed no levels at all anymore and had a fibroscan which showed 12%. 3 months later I had a liver ultrasound done in which I was not diagnosed fatty liver disease, but unknown hepatocellular disease that has progressed to my entire liver and my liver is now coarsened in a very short amount of time since my last liver check up. I am 115lbs. Not overweight and eat healthy due to my digestive issues. This illness comes back acutely so often and I feel I never know where or what it will strike and sometimes seems systemic as even my eyes have become acutely inflamed, kidneys, and inner ears. I would like a chance to survive into older age and have the option of long term treatment if it’s available to someone with whatever condition I might have. Only official diagnosis I have is Factor V Leiden. Thank you for any help.