Guest guest Posted December 12, 1999 Report Share Posted December 12, 1999 Debbie, My son, , has been experiencing that exact type of pain, a few times a day, sharp quick pains. He had an ultrasound a few weeks ago(checking for gall stones, I guess) and that was negative. I've heard nothing more from any doctors about the pain or the source of it. It's SO frustrating when he tells me he has pain and there's nothing I can do about it - I can't even explain it to him because no one has explained it to me. I know I've been no help to you, except to tell you that someone else is experiencing the same thing. I hope someone in the group can help us!!!! Jodi Rhoades, 's Mom - age 10 (Definitive diagnosis 6-99 - symptoms since 96) " For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope. " 29:11 Reply-To: egroups To: <egroups> Subject: pain Date: Sun, 12 Dec 1999 08:41:26 -0500 I have been experience sharp, stabbing pain in the URQ area for the past several days, 2 or 3 times a day. The pain is nothing like the pain I get with a cholangitis attack but is definitely in the liver. The stabbing pain lasts only a few seconds but is enough to take my breath away. Has anyone else had any experience with this type of pain? I have been on antibiotics for the last 30 days for a " low-grade " cholangitis episode that just won't quit. Debbie ------------------------------------------------------------------------ GET $100 IN COUPONS FOR TRYING GATOR! Grab the Gator! Free software does all the typing for you! Gator fills in forms and remembers passwords with NO TYPING at over 100,000 web sites! http://clickhere./click/2093 -- Easily schedule meetings and events using the group calendar! -- /cal?listname= & m=1 ______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 1999 Report Share Posted December 15, 1999 Edith, I feel so bad for the PSCers who are dealing with doctors that don't know much about the disease and thank God everyday for Phil's doctors. I can't imagine a doctor in his right mind that would treat anyone, regardless of his knowledge, the way Dave was treated. It sounds to me like it was a good thing his liver doctor moved and Dave finally got what he needed. Peg edith pearson wrote: > For years after my husband was diagnosed with PSC we were told that all his > symptoms were in his head. A month before he received his transplant the > doctor told him to be a " man " - that there really wasn't much wrong with > him and that it would be years before he'd need a transplant. We were told > the itching was psychological, that the fatigue was because he was lazy > (which believe me he never was)and to smarten up and get on with life. When > we pointed out that liver functions were ever increasing we were told they > meant nothing that they would go a lot higher before there would be any > physical problems. Our liver specialist moved away and never bothered > telling his patients that he was going. If I sound a little bitter believe > me I am. When you see the difference the transplant made you start to > understand that it was the doctor who had a psychological problem - some of > them sure don't know what they are talking about and won't refer you to > someone who can help you. Dave spent too much time feeling guilty about not > feeling well and getting no satisfaction from the medical profession. > > If you have a definite diagnoses of PSC and you don't always feel well > believe me its the PSC it is not all in your head. > ------------------------------------------------------------------------ > Accurate impartial advice on everything from laptops to tablesaws. > http://clickhere./click/1701 > > -- Check out your group's private Chat room > -- /ChatPage?listName= & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 1999 Report Share Posted December 15, 1999 Edith, I feel so bad for the PSCers who are dealing with doctors that don't know much about the disease and thank God everyday for Phil's doctors. I can't imagine a doctor in his right mind that would treat anyone, regardless of his knowledge, the way Dave was treated. It sounds to me like it was a good thing his liver doctor moved and Dave finally got what he needed. Peg edith pearson wrote: > For years after my husband was diagnosed with PSC we were told that all his > symptoms were in his head. A month before he received his transplant the > doctor told him to be a " man " - that there really wasn't much wrong with > him and that it would be years before he'd need a transplant. We were told > the itching was psychological, that the fatigue was because he was lazy > (which believe me he never was)and to smarten up and get on with life. When > we pointed out that liver functions were ever increasing we were told they > meant nothing that they would go a lot higher before there would be any > physical problems. Our liver specialist moved away and never bothered > telling his patients that he was going. If I sound a little bitter believe > me I am. When you see the difference the transplant made you start to > understand that it was the doctor who had a psychological problem - some of > them sure don't know what they are talking about and won't refer you to > someone who can help you. Dave spent too much time feeling guilty about not > feeling well and getting no satisfaction from the medical profession. > > If you have a definite diagnoses of PSC and you don't always feel well > believe me its the PSC it is not all in your head. > ------------------------------------------------------------------------ > Accurate impartial advice on everything from laptops to tablesaws. > http://clickhere./click/1701 > > -- Check out your group's private Chat room > -- /ChatPage?listName= & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 1999 Report Share Posted December 15, 1999 Edith, I feel so bad for the PSCers who are dealing with doctors that don't know much about the disease and thank God everyday for Phil's doctors. I can't imagine a doctor in his right mind that would treat anyone, regardless of his knowledge, the way Dave was treated. It sounds to me like it was a good thing his liver doctor moved and Dave finally got what he needed. Peg edith pearson wrote: > For years after my husband was diagnosed with PSC we were told that all his > symptoms were in his head. A month before he received his transplant the > doctor told him to be a " man " - that there really wasn't much wrong with > him and that it would be years before he'd need a transplant. We were told > the itching was psychological, that the fatigue was because he was lazy > (which believe me he never was)and to smarten up and get on with life. When > we pointed out that liver functions were ever increasing we were told they > meant nothing that they would go a lot higher before there would be any > physical problems. Our liver specialist moved away and never bothered > telling his patients that he was going. If I sound a little bitter believe > me I am. When you see the difference the transplant made you start to > understand that it was the doctor who had a psychological problem - some of > them sure don't know what they are talking about and won't refer you to > someone who can help you. Dave spent too much time feeling guilty about not > feeling well and getting no satisfaction from the medical profession. > > If you have a definite diagnoses of PSC and you don't always feel well > believe me its the PSC it is not all in your head. > ------------------------------------------------------------------------ > Accurate impartial advice on everything from laptops to tablesaws. > http://clickhere./click/1701 > > -- Check out your group's private Chat room > -- /ChatPage?listName= & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 1999 Report Share Posted December 15, 1999 Reminds me of what a comedian once said: 50 percent of all doctors in this country graduated in the bottom half of their class. It's dangerous to paint with a broad brush, however. Like any profession, there are good practitioners and bad practitioners. None of us should feel that we are being held captive by a particular physician. We all can vote with our checkbooks and our feet. One thing I've learned in the short time I've known about PSC (dx October '99) is that it is a tricky condition to diagnose and to treat. One doctor may know a lot about it, while another may know very little. It's up to us to discern where our doctors' skill sets are and then go to where we will be treated by knowledgable, compassionate, caring doctors. Tom " edith pearson " wrote: original article:/group//?start=7167 > > > For years after my husband was diagnosed with PSC we were told that all his > symptoms were in his head. A month before he received his transplant the > doctor told him to be a " man " - that there really wasn't much wrong with > him and that it would be years before he'd need a transplant. We were told > the itching was psychological, that the fatigue was because he was lazy > (which believe me he never was)and to smarten up and get on with life. When > we pointed out that liver functions were ever increasing we were told they > meant nothing that they would go a lot higher before there would be any > physical problems. Our liver specialist moved away and never bothered > telling his patients that he was going. If I sound a little bitter believe > me I am. When you see the difference the transplant made you start to > understand that it was the doctor who had a psychological problem - some of > them sure don't know what they are talking about and won't refer you to > someone who can help you. Dave spent too much time feeling guilty about not > feeling well and getting no satisfaction from the medical profession. > > If you have a definite diagnoses of PSC and you don't always feel well Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 1999 Report Share Posted December 15, 1999 Reminds me of what a comedian once said: 50 percent of all doctors in this country graduated in the bottom half of their class. It's dangerous to paint with a broad brush, however. Like any profession, there are good practitioners and bad practitioners. None of us should feel that we are being held captive by a particular physician. We all can vote with our checkbooks and our feet. One thing I've learned in the short time I've known about PSC (dx October '99) is that it is a tricky condition to diagnose and to treat. One doctor may know a lot about it, while another may know very little. It's up to us to discern where our doctors' skill sets are and then go to where we will be treated by knowledgable, compassionate, caring doctors. Tom " edith pearson " wrote: original article:/group//?start=7167 > > > For years after my husband was diagnosed with PSC we were told that all his > symptoms were in his head. A month before he received his transplant the > doctor told him to be a " man " - that there really wasn't much wrong with > him and that it would be years before he'd need a transplant. We were told > the itching was psychological, that the fatigue was because he was lazy > (which believe me he never was)and to smarten up and get on with life. When > we pointed out that liver functions were ever increasing we were told they > meant nothing that they would go a lot higher before there would be any > physical problems. Our liver specialist moved away and never bothered > telling his patients that he was going. If I sound a little bitter believe > me I am. When you see the difference the transplant made you start to > understand that it was the doctor who had a psychological problem - some of > them sure don't know what they are talking about and won't refer you to > someone who can help you. Dave spent too much time feeling guilty about not > feeling well and getting no satisfaction from the medical profession. > > If you have a definite diagnoses of PSC and you don't always feel well Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 1999 Report Share Posted December 15, 1999 Reminds me of what a comedian once said: 50 percent of all doctors in this country graduated in the bottom half of their class. It's dangerous to paint with a broad brush, however. Like any profession, there are good practitioners and bad practitioners. None of us should feel that we are being held captive by a particular physician. We all can vote with our checkbooks and our feet. One thing I've learned in the short time I've known about PSC (dx October '99) is that it is a tricky condition to diagnose and to treat. One doctor may know a lot about it, while another may know very little. It's up to us to discern where our doctors' skill sets are and then go to where we will be treated by knowledgable, compassionate, caring doctors. Tom " edith pearson " wrote: original article:/group//?start=7167 > > > For years after my husband was diagnosed with PSC we were told that all his > symptoms were in his head. A month before he received his transplant the > doctor told him to be a " man " - that there really wasn't much wrong with > him and that it would be years before he'd need a transplant. We were told > the itching was psychological, that the fatigue was because he was lazy > (which believe me he never was)and to smarten up and get on with life. When > we pointed out that liver functions were ever increasing we were told they > meant nothing that they would go a lot higher before there would be any > physical problems. Our liver specialist moved away and never bothered > telling his patients that he was going. If I sound a little bitter believe > me I am. When you see the difference the transplant made you start to > understand that it was the doctor who had a psychological problem - some of > them sure don't know what they are talking about and won't refer you to > someone who can help you. Dave spent too much time feeling guilty about not > feeling well and getting no satisfaction from the medical profession. > > If you have a definite diagnoses of PSC and you don't always feel well Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2000 Report Share Posted January 1, 2000 Dear Edith, You are 100% correct regarding the docs that said it was all in your husband's head. I was told that a lot. I was told the itching was just dry skin...even up until 2 months prior to tx. That is sooo frustrating b/c I'm a very " gullible? " person and would believe what they would say and spend days and days feeling so guilty for complaining. But since the tx...no itching...EVER...No liver pain...ever, etc. The list goes on and on!!! Take care and I will add y'all to our prayer list!!! Much love and many prayers, Jacquelyn Spencer 4/24/99 Quote Link to comment Share on other sites More sharing options...
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