Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Ray, If/whenever you feel you'd like to join a group where some of the members have PSC, drop me an email offlist and I'll give you the addy. I am so glad you've found a doctor that seems genuinely interested in caring for you. It seems an unfortunate fact of life these days that they are few and far between. anne New Doctor Saw my new doctor on Thursday. At first I was freaking out, because when they handed me the new patient paperwork to fill out it said Peg-Intron on the clipboard. And then they handed me a pen, one of those nice big fat ones, that also said Peg-Intron on it. Being as I left my previous doctor because he refused to use Pegasys, this was a real bad sign. Filled it all out, went in to see the doc and all the time we were talking in the back of my mind I’m thinking “Ok, how did this guy get his license? I can’t believe what I am hearing!” Turns out he is very competent and also somehow managed to maintain some humane qualities. I mean, he not only asked questions, he also answered them! All of them. And my Ego and Arrogance detector just couldn’t pick up on a thing! When I asked about Pegasys he said he couldn’t imagine any doctor not be willing to prescribe it! The licensing boards must be slipping! Here is the interesting part. He was telling me why a lot of GI doctors do not want to treat hep c patients. It simply isn’t profitable for them. Unlike numerous other ailments of the GI tract, there are no procedures involved with treating hep patients. No colonoscopy, sigmoidosocopy, no tubes down your throat, etc, all of which pay well. With a hep c patient the doctor just prescribes the Tx, sees the patient maybe every 3 months or so, so only makes money off the office visits! Not very lucrative, not to mention having to help patients with side effects which again brings in no real money! My new doctor did notice something in my biopsy report that apparently my previous doctor didn’t not see. It says “The bile ducts are noted dilated.” Then he mentioned a condition called Primary sclerosing cholangitis (PSC). Don’t be surprised if you have never heard of it; it’s actually a condition that stems from colitis (which I had/have), not from hepatitis. Here’s a short definition: “Primary sclerosing cholangitis (PSC) is a chronic, progressive, inflammatory disease characterized by fibrosis of the bile ducts.” When I look at the symptoms I have 2 out of 4 of them, no itching or fever, but considerable pain and night sweats. I have, in fact, been feeling so bone weary and achy, that I haven’t gotten around to posting this msg until now. Walking more than a couple of blocks leaves me very exhausted nowdays. There is a special type of MRI that is used to diagnose this condition, called MRCP. I still have to get it scheduled, which might take a month or so. I’ve really just started reading up on PSC, and my doctor didn’t say a lot about it. When he first told me he thought it might be a typo and maybe meant “not dilated” instead of “noted dilated” I said, Oh, ok. But now I am thinking that he was just trying to explain why my previous doctor, who he knows, didn’t pick up on it. Or maybe I got it wrong, the MRCP will tell. From the little I have read it sounds like the recommended treatment is a liver transplant. Of course with the hepatitis complication who knows? Even my inner gnome doesn't have a clue! Sounds weird to even mention hep as a complication rather than my main issue, but this PSC does sound a bit nasty. Then again, maybe I am jumping to conclusions too soon. Time will tell! Ray Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 A conscientious doctor! That's a good luck sign! Doug > My new doctor did notice something in my biopsy report that apparently > my previous doctor didnt not see. It says The bile ducts are noted > dilated. Then he mentioned a condition called Primary sclerosing > cholangitis (PSC). Dont be surprised if you have never heard of it; > its actually a condition that stems from colitis (which I had/have), > not from hepatitis. Heres a short definition: Primary sclerosing > cholangitis (PSC) is a chronic, progressive, inflammatory disease > characterized by fibrosis of the bile ducts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Did you say you're on TX now or not? WulfeMom New Doctor Saw my new doctor on Thursday.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Congrats on the new dr Ray, and plz don't be alarmed by the PSC, it might be nothing really more than a spelling mistake. When i first did some test for dad before finding out he was a C +ve, i found out some enzymes r way high, and there was an explanation that it could be cancer colon, but later i found out it was only coz he is a chronic HCV patient, and then i was ok, but honestly, i would understand if u r not sleeping, i was there before. God Bless Us All. Nesrine > > Saw my new doctor on Thursday. At first I was freaking out, because when they handed me the new patient paperwork to fill out it said Peg-Intron on the clipboard. And then they handed me a pen, one of those nice big fat ones, that also said Peg-Intron on it. Being as I left my previous doctor because he refused to use Pegasys, this was a real bad sign. > > > > Filled it all out, went in to see the doc and all the time we were talking in the back of my mind I'm thinking " Ok, how did this guy get his license? I can't believe what I am hearing! " Turns out he is very competent and also somehow managed to maintain some humane qualities. I mean, he not only asked questions, he also answered them! All of them. And my Ego and Arrogance detector just couldn't pick up on a thing! When I asked about Pegasys he said he couldn't imagine any doctor not be willing to prescribe it! The licensing boards must be slipping! > > > > Here is the interesting part. He was telling me why a lot of GI doctors do not want to treat hep c patients. It simply isn't profitable for them. Unlike numerous other ailments of the GI tract, there are no procedures involved with treating hep patients. No colonoscopy, sigmoidosocopy, no tubes down your throat, etc, all of which pay well. With a hep c patient the doctor just prescribes the Tx, sees the patient maybe every 3 months or so, so only makes money off the office visits! Not very lucrative, not to mention having to help patients with side effects which again brings in no real money! > > > > My new doctor did notice something in my biopsy report that apparently my previous doctor didn't not see. It says " The bile ducts are noted dilated. " Then he mentioned a condition called Primary sclerosing cholangitis (PSC). Don't be surprised if you have never heard of it; it's actually a condition that stems from colitis (which I had/have), not from hepatitis. Here's a short definition: " Primary sclerosing cholangitis (PSC) is a chronic, progressive, inflammatory disease characterized by fibrosis of the bile ducts. " > > > > When I look at the symptoms I have 2 out of 4 of them, no itching or fever, but considerable pain and night sweats. I have, in fact, been feeling so bone weary and achy, that I haven't gotten around to posting this msg until now. Walking more than a couple of blocks leaves me very exhausted nowdays. > > > > There is a special type of MRI that is used to diagnose this condition, called MRCP. I still have to get it scheduled, which might take a month or so. > > > > I've really just started reading up on PSC, and my doctor didn't say a lot about it. When he first told me he thought it might be a typo and maybe meant " not dilated " instead of " noted dilated " I said, Oh, ok. But now I am thinking that he was just trying to explain why my previous doctor, who he knows, didn't pick up on it. > > > > Or maybe I got it wrong, the MRCP will tell. From the little I have read it sounds like the recommended treatment is a liver transplant. Of course with the hepatitis complication who knows? Even my inner gnome doesn't have a clue! > > > > Sounds weird to even mention hep as a complication rather than my main issue, but this PSC does sound a bit nasty. Then again, maybe I am jumping to conclusions too soon. Time will tell! > > > Ray > > > > Quote Link to comment Share on other sites More sharing options...
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