Hello,
I have read countless posts on this site. It is full of both wonderful people and priceless information. I am very grateful for all your contributions.
Thanks for reading and perhaps responding to my story. I have lived in Thailand for 16 years. Recently, a radiologist suspected I might have PSC from an ultrasound she gave me one evening at her clinic. If this turns out to be incorrect as I’m still investigating my condition, it will be the fourth time I have been mistakenly diagnosed with a terminal illness here in the land of smiles.
In 2006, I was told I had a lung mass. It turned out to be my aorta. In 2008, from a CT scan, I was told I had a pulmonary embolism, pulmonary hypertension, and cancerous lymph nodes. All wrong on further investigation. In 2010, I was told I had a mass blocking my small intestine. It was bacteria!
The ultrasound that has given me so much anxiety, came about when I was struggling with bowel pain, possibly IBS. I went to the clinic to get the ultrasound to take to a GI. The woman noted I had sludge in my gallbladder, a thinned walled gallbladder, normal sized spleen and liver, no ascites, no abnormal dilation of my biliary ducts, but had gas blocking my pancreas. So why the conclusion of PSC? From what I have read, these descriptions are the exact opposite of PSC. I had no symptoms except bowel pain that was really all over the place.
I went to get a blood test and my direct bilirubin was 1.8. OK, a bit high but every other blood market was normal. Two months later that DB was 1.0, back in normal range. I had no symptoms except diffused bowel pain like IBS. Did a SIBO test. Negative.
Then I started losing weight. A lot of weight. I started to have trouble sleeping and was very anxious about the pain in my gut. I went to see a respected liver doc, who thought all my numbers normal but ordered a MRCP based on my weight loss. On the day of my MRCP, I had had little sleep and was really haggard. I had no idea what an MRCP was but ten minutes into it, I had to get out. There was no way I could complete it. I was freaked out. The noise and tube were just too much for me. I guess I’m a bit of wus. My American friends asked why the doc hadn’t given me a Valium or something to calm me down. I don’t know but when I do get another one, as there is now a bit of long line, I will take a valium.
So the test that could have helped diagnosed my condition then is now two months out barring a cancellation appointment.
In the meantime, I went to a GI who ordered a colonoscopy and a gastroscopy. She dismissed any concerns about my liver from my blood work. All normal. Those two tests revealed benign polyps and inflammation in my stomach and duodenum. Lab work is being done on samples from my gut and colon polyps. Nothing serious is suspected.
In the meantime, I have been eating and gaining weight. My pain has subsided a bit and is concentrated in my gut behind my Xiphoid Process and just to the right of that, which appears to be where the inflammation is located. No liver area pain or gallbladder area pain.
But here’s the kicker. I have been feeling diffused itching and pricking around my body these past two weeks. I have been completely out of my mind on this, so I am not ruling out a mental cause to the itching and pricking feelings. I know I need an MRCP to get a better picture and I am determined to go through with it with the help of a sedative. In the meantime, the mild itching has me worried. I have also been fatigued but this could have come from lack of sleep due to IBS symptoms.
I guess I’m sharing this story to get some perspective during my long weight until diagnoses. I will be traveling to the states and I have considered consulting with a stateside doc but the costs can be immense and I only have insurance here in Thailand. The health care facilities are good but sometimes the conclusions are way, way off.
Thanks again for any comments you may have, including those directed to my mental condition. Keep in mind my history with the medical community here. Quick and incorrect conclusions. These warm and wonderful people have a real need to be right and quick about it. I think a radiologist might have said something like, “We need to do more investigation before we can conclude what you might have.” Not, you have a rare chronic illness based on my fuzzy ultrasound.