Awaiting Diagnosis


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.

Hello and welcome to the group. Thanks for your detailed post. My you have been going through something for sure. I know it’s frustrating not getting accurate diagnosis on several things and now this with your liver. In light of all you have said about the healthcare where you live, I’d encourage you to seek out a hepatologist at a transplant center here in the States. If you are coming anywhere near North Carolina I’d like to recommend Duke University Medical Center located in Durham NC. They have handled all my care, transplant and after care. They have an excellent team of specialists in many different fields and I know they will give you an accurate assessment of your health needs.
If interested here are a couple links to get your started. I hope this helps and I hope you get some good solid answers soon. The itching will almost drive you crazy. There are meds for that as well. If it gets worse, ask your doctor about Rifampin. Every patient responds to different meds differently, but it was a life-saver for me as far as itching. I took 300 mg twice a day.

Transplant Program -

One of my doctors and the chief of Hepatology -

PSC 2011 / Liver Transplant 2015

Thanks for your reply Mark. I have read many of your posts and appreciate the time you give back to the community.

I don’t have insurance in the US as yet. Not sure who would insure me now. I could sign up with ACA (Obammacare) next November as that’s the next available sign up period. Would be curious to know if anyone has used the ACA for serious chronic issues like this. I can’t say I have been completely diagnosed. I would say they have good doctors here but it’s not easy finding them. I have insurance here and again, they have all the tools, it’s just the conclusions that are sometimes off.

Thanks again for the links. I’m from Los Angeles and that’s where I would set up my healthcare shop if I were to return. I have two young children here and a wife, so it’s not easy pulling up stakes.

I will continue reading and posting. Thanks again!

Just to follow up, you may be able to get an exception through the ACA and get insurance before next November. They do have provisions for such exceptions I believe. As far as ACA for transplant, I am here today as a result of having insurance through the ACA. I was able to get Blue Cross Advantage coverage and it completely paid for my liver transplant, and all the meds and care afterwards. A transplant cost around 1/2 a million dollars and then the after care the first year can run another $150,000. Insurance was the only way I was able to get my transplant. Hope that helps.


That’s great to hear, Mark. I may have more questions about your experience as I get more information on my condition. What a great resource this forum is! I wonder if anyone has tried strange alternative therapies like high dosing IV vitamin C or ozone or anything like that. I have also wondered about long term water fasting. Thanks again for the info!