I’m a healthy (I do 150+ mile bike rides) mid-20s guy who showed elevated enzymes on a blood test about a year ago.
I was referred to a hepatologist who did a wide array of blood tests, an ultrasound, and even a liver biopsy, which all showed nothing wrong with my liver. I relaxed and got on with my life.
Then recently, I got the results back from an MRI. My hepatologist said that it wasn’t extremely clear and that reading MRI images is more of an art than a science, but there appeared to be some scarring on my bile ducts that would be consistent with a PSC diagnosis.
I immediately Google’d PSC and began freaking out that I was going to die. In a subsequent conversation with my hepatologist, he said that if he had to guess, he’d say it’s a 50/50 chance that I have PSC.
I’m on Ursodiol now and he’s going to follow up in a few months with blood tests to see if my enzymes are down.
I guess it seems like it’s just a waiting game at this point to see what evolves? Could it be months or even years before I know anything for sure?
Mentally, I’m not doing well. I had a screaming fit during an incident with the police; luckily managed to get away to avoid arrest, but then I proceeded to scream so much that I collapsed from exhaustion.
After that, I’ve experienced stomach and lower-back pain as well as bloating, which have caused me to worry even more as I’ve read that those could be signs of IBS and/or PSC. However, I’ve convinced myself that it’s most likely due to the stress and they seem to be getting better. I also read that some of that could be side effects of Ursodiol?
Anyway, I feel kind of weird posting here because a lot of people seem like they are going through stuff much worse than I am (that really scares me), but at the same time, I’m mentally not able to even deal with the possibility, let alone the actual disease.