Re: Mark-Las Vegas

[Guest guest]

Hi Janie:

Good question, How did I discover I had PSC? Well long story short, I was working on March 3rd and I started to have terrific pain in my RUQ. Here is where it gets a bit weird, I'm a sonographer (ultrasound tech), and having scanned myself for about 25 years I knew I had dilated intrahepatic bile ducts and, up till that night, no pain and no stones (Yes, denial is a wonderful thing and I always believed in the mantra that if it ain't broke don't fix it). So I went to my lab and scanned myself, looked at my ducts and Gallbladder, then checked myself into the my ER, where I work. I received pain drugs, oral contrast and a CT. Two days later I was post ERCP and lap choli (GB removed) and in more pain then when I came in. (I believe it was pancreatitis, not diagnosed). The local GI doc's thought I was an enigma and did not know for sure what I had. I was referred to the Mayo Clinic in sdale and they diagnosed me as having PSC. Up until 8 weeks ago, I did not even have so much as a cavity and now, who knows? In hindsight, I think I was misdiagnosed a number of times even though I told doctors I had dilated CBD and intrahepatic ducts they did not believe or care to investigate beyond the simple blood test. But probably it best that I did not know as it would not have changed the outcome and I had 8 years of living with and not knowing about the disease as I watched my liver scleros. I asked about seeing Dr. Gish but since we have a confident doctor and a confirmed diagnosis, and I am in the Mayo protocol ( where the majority of my testing is done) I don't want to complicate issues since he does not live here locally. I am lucky that my wife is a nurse, our private MD has given her privileges to draw my blood for the blood thinners I am on for my DVT ( another complication of PSC is prone to clots: rare) I have had to diagnose much of my problem myself with the aid of my wife, ultrasound and carte blanche of lab from my doctor. ( we found the pancreatitis ourselves after pushing the MD's to order labs for that test), I found my own DVT and my biloma with ultrasound and the continues fluid collection from the pancreas and causing pressure on my right kidney (an now I have to have a CT since the fluid is not clear but turbulent). I am doing good today, working but exhausted easily.( my major hurdle to date). All this in 8 weeks...not a dull moment and so much more fun to look forward too...( too bad I can't take up drinking now)

thanks Janie and everybody for your input

Mark in Las Vegas

On Tue, 06 May 2003 06:54:28 -0000 "craminvegas" writes:

Hey maybe the shocks are a Las Vegas thing! Ha Ha! (Have to have some humor!) Mine come and go. They get much worse when I have a cholangitis attack. They are very hard to describe to anyone who has never had them. It IS nice to talk to people who know the things you describe about your body or pain don't think you are crazy, huh? I kept going to docs telling them something was wrong, and they just ignored me, one telling me it was all in my head! (I did happen to send that one my diagnosis!)I know all about the really bad pain! You just hope to never feel it again. Have the docs you have now told you to check your temp daily? Dr. Gish, if you see him, will tell you to do that, and keep a chart. He will probably give you a perscription for some antibiotic so that if you start to feel another attack coming on, you just start with that and get yourself to Sunrise pronto. How did you find out you had PSC, if you don't mind my asking? Have another great day in Las Vegas! Janie