Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 , I've had LUQ pain from the beginning of this AIH business. My doctor doesn't ignore it but he keeps wanting to do a colonoscopy because he's a Hepatologist and a GI doctor and he thinks in terms of the worst, i.e., colon cancer. I don't think I have anything like that for several reasons. No nausea or bowel problems, and the pain sometimes disappears for days and even weeks. It's most significantly worse when I've been sitting upright and forward, like now, at the computer, as though pressure aggravates it. I've had a couple of ultrasounds to see if my spleen is enlarged. Apparently the two organs in the ULQ that might be suspect are upper colon and spleen. My spleen is never enlarged, but a new Internist I saw a few weeks ago and who I see again on Friday, seems to think that my spleen still could be the culprit, enlarged or not. He wants me to have a CT scan. He found something on exam that inspired that test. I haven't had the CT yet because we were out of town for a couple of weeks and I just am weary of tests unless I'm feeling really, really sick, which I decidedly am NOT right now. If they ever find the cause of the pain, I'll let you know, but meantime, I live with it. But, it's not fun. When lying down, try lying on the side where you feel the pain. That relieves mine. I've been told that adult onset non-insulin dependent diabetes is definitely not autoimmune. But today's medical facts can change to a new set of facts tomorrow. They may eventually decide that all forms of diabetes are autoimmune. In fact, I'm beginning to wonder if autoimmunity is just a basic human condition that we all have, but only those whose autoimmunity is somehow triggered are affected by it. I'm unclear about the link between the pancreas and liver disease, but I know that I had the type of ECRP or whatever it's called that goes into the pancreas when I first got sick. In fact, they specifically were checking me for pancreatic cancer when they determined I had AIH instead. I'm so grateful my pancreas is apparently fine. My brother died from pancreatic cancer and it was heartbreaking and incredibly painful for him. Pancreatic pain, incidentally, is generally in the back. His earlier symptoms were those of a severe ulcer but instead of food relieving the pain, it made it worse if anything. Believe me, I'd rather have liver failure any time than that. At least there's some hope for us. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Geri, about the LUQ pain you describe. Just a comment form me . I think that the oain may be the spleen from the sound of it. Although mine was very enlarged and still is post~tx, it enlarges in AIH, mainly because of the backflow of blood from the liver. When the liver is not functioning and the blood is backing up, it can cause the esophageal varices and it can also cause the spleen to become tender and sometimes quite enlarged. This is what my hepatologist told me. Before I had gotten my AIH diagnosis the DRS. wanted to remove my spleen and when the oncologist revealed I had AIH, he said my spleen would have to stay in for when I had my transplant. Lori C. AIH Liver tx 3~11~97 Re: [ ] LUQ Pain >From: Geri Spang <spangs@...> > >, >I've had LUQ pain from the beginning of this AIH business. My doctor doesn't >ignore it but he keeps wanting to do a colonoscopy because he's a Hepatologist >and a GI doctor and he thinks in terms of the worst, i.e., colon cancer. I >don't think I have anything like that for several reasons. No nausea or bowel >problems, and the pain sometimes disappears for days and even weeks. It's most >significantly worse when I've been sitting upright and forward, like now, at >the computer, as though pressure aggravates it. I've had a couple of >ultrasounds to see if my spleen is enlarged. Apparently the two organs in the >ULQ that might be suspect are upper colon and spleen. My spleen is never >enlarged, but a new Internist I saw a few weeks ago and who I see again on >Friday, seems to think that my spleen still could be the culprit, enlarged or >not. He wants me to have a CT scan. He found something on exam that inspired >that test. I haven't had the CT yet because we were out of town for a couple >of weeks and I just am weary of tests unless I'm feeling really, really sick, >which I decidedly am NOT right now. If they ever find the cause of the pain, >I'll let you know, but meantime, I live with it. But, it's not fun. When >lying down, try lying on the side where you feel the pain. That relieves mine. > >I've been told that adult onset non-insulin dependent diabetes is definitely >not autoimmune. But today's medical facts can change to a new set of facts >tomorrow. They may eventually decide that all forms of diabetes are >autoimmune. In fact, I'm beginning to wonder if autoimmunity is just a basic >human condition that we all have, but only those whose autoimmunity is somehow >triggered are affected by it. > >I'm unclear about the link between the pancreas and liver disease, but I know >that I had the type of ECRP or whatever it's called that goes into the pancreas >when I first got sick. In fact, they specifically were checking me for >pancreatic cancer when they determined I had AIH instead. I'm so grateful my >pancreas is apparently fine. My brother died from pancreatic cancer and it was >heartbreaking and incredibly painful for him. Pancreatic pain, incidentally, >is generally in the back. His earlier symptoms were those of a severe ulcer >but instead of food relieving the pain, it made it worse if anything. Believe >me, I'd rather have liver failure any time than that. At least there's some >hope for us. > >Take care, >Geri > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 Dear Lori: I have the LUQ pain, too. My doctor told me essentially the same thing about the spleen. Like Geri, I've been told that it was an either/or situation with the spleen or the colon. Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Lori, I've always wondered if the pain was from my spleen. It's more of a sharp, focused pain, like you'd have from a broken rib or an ulcer or something, but it's not always in the same place on my left side and it disappears for days and weeks at a time. I've had it for two years and it's never become significantly worse. Sometimes there's a swollen feeling and it actually is painful to press on the area. I know that doctors tendency is to look for the typical and the obvious, but they shouldn't be so quick to conclude it can't be my spleen simply because it's not enlarged. I hope that the CT scan can pinpoint whatever is going on once and for all. I didn't realize that removal of the spleen could be dangerous for transplant patients. Not that I expect to have mine removed. Doesn't loss of the spleen increase risks for infection? Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Hi everyone, Some comments on spleen pain. I have it from time to time when my liver acts up. The spleen is also a filtering organ. It cleans the blood. When our heart beats, the pressure pushes blood through filtering valves in the spleen. When the liver is stressed and can't do its job as well more stress is placed on the spleen. If you are already sick with a cold or bacterial infection this puts added stress on the spleen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Geri, Yes the spleen helps filter out infectons, and when one has a transplant you are really immunosuppressed, especially the first year, and you need the spleen to help filter out the bad stuff. They told me that my spleen is still abit enlarged and so I suppose that would be true if it is trying to help filter out infections an such. My white blood count hangs in at around 3 to 4 which is a tad bit low, that is because of the Neoral and the Cellcept and prednisone, immunosuppressants. So I still occasionally get LUQ pain, but is much less than before transplant. Re: [ ] LUQ Pain >From: Geri Spang <spangs@...> > >Lori, >I've always wondered if the pain was from my spleen. It's more of a sharp, >focused pain, like you'd have from a broken rib or an ulcer or something, but >it's not always in the same place on my left side and it disappears for days >and weeks at a time. I've had it for two years and it's never become >significantly worse. Sometimes there's a swollen feeling and it actually is >painful to press on the area. I know that doctors tendency is to look for the >typical and the obvious, but they shouldn't be so quick to conclude it can't be >my spleen simply because it's not enlarged. I hope that the CT scan can >pinpoint whatever is going on once and for all. I didn't realize that removal >of the spleen could be dangerous for transplant patients. Not that I expect to >have mine removed. Doesn't loss of the spleen increase risks for infection? >Take care, >Geri > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Hi all, I was told that I have a second or accessory spleen, does anyone know anything about that? Also, I have been having terrible dizziness, memory loss and mental confusion (more than I normally do! LOL) lately. Anyone have any of that? Just what I need, more symptoms to tell my GI about! As if he has cared about all the other ones! LOL The quest continues... (AIH) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 1999 Report Share Posted September 11, 1999 In a message dated 09/11/1999 6:45:58 AM Eastern Daylight Time, spangs@... writes: << On the plus side, results of the scan will be sent to both my Hepatologist and my Internist, so there will be two different people arriving at their independent conclusions about what's causing the pain. >> Hi, Actually there is a third opinion, the doctor who reads the scan is the specialist who first reads any scan, MRI, e-ray, etc. that is done. Just thought I would throw that in. Have a good day, and remember...Laughter is the music of a happy heart, love is it's sustenance. Sooooo...laugh a lot, it is healing. Joan, AIH, PBC, HBP Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 1999 Report Share Posted September 11, 1999 Re LUQ, I was scheduled for a CT scan about 3 weeks ago to rule out cancer, or so I thought. I decided to put it off, maybe indefinitely, since I have no nausea or other symptoms that would seem to be related to a GI problem. However, I was told today that the pain is definitely in the area of my spleen and that a CT scan can rule out a possible blood clot, a possibility I haven't heard mentioned previously. The doctor, my new Internist, mentioned several other possibilities. Though he thinks (as I do) that it could be muscular pain, I'll go ahead with the CT scan after all. On the plus side, results of the scan will be sent to both my Hepatologist and my Internist, so there will be two different people arriving at their independent conclusions about what's causing the pain. It definitely reacts to pressure, by the way. For those whose doctors appear to be stumped, it might not hurt to ask about a blood clot possibility - though I know they hate to be second guessed. Because the spleen apparently has blood flow problems when there's liver disease, a clot doesn't sound all that impossible. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 Joan, <<Actually there is a third opinion, the doctor who reads the scan is the specialist who first reads any scan, MRI, e-ray, etc. that is done. Just thought I would throw that in. >> Good point if they can get the doctor to listen. But, absent knowledge about other symptoms, sometimes radiology reports miss things. My radiology reports from weeks before my liver biopsy showing stage IV cirrhosis, showed only a distended gallbladder and fatty liver. The biopsy and good doctors were the key, at least for me. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 Lori, I'm hoping that there is nothing wrong with my spleen and that the pain is muscular. It's been going on for so long I hardly think about it except when it's especially painful. I wonder, though, if there can be a spleen problem without it being swollen? I don't seem to have a problem with vulnerability to infection and that's good, I hope. Either that or my immune system is stronger than the meds I'm taking and that's probably not good. Why oh why do these side issues have to come up? Take care, Geri Quote Link to comment Share on other sites More sharing options...
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