Unknown RUQ pain? I feel like a guinea pig!

I origionally was diagnosed in Sept of 2007 with Gastropresis. Then about October of 2007 I started having Right Upper Quadrant pain, right under the base of my rib cage. At first it was where it came and went with great intensity. Then it got to where it was constant pain with flare ups of more extreme pain. November of 2007 I was hospitalized for 4 days because the pain was so severe. Every test radiologically and blood wise has come back normal other than my hemoglobin and hematocrit being extremely low, requiring me to get iron infusion because I could not tolerate oral iron. Occassionaly my platelet count will come back high or occassionaly my white blood cell count will come back high. Amylase and lipase always come back normal even during extreme bouts of pain. Gallbladder was removed in 2000, no stones, decreased ejection fraction of 10%. I have to travel 2 hours out of town to see another gastroenterologist because mine here in town cannot figure it out. I make this trip quite often and keep getting the same puzzling look and pills pushed at me. I have tried erythromycin, reglan, imipramine will no relief. I have to take Vicodin to help with pain which takes the edge off, but then makes the Gastroparesis worse. Now I have to go back to the 2 hour out of town doctors to see a Hepatobiliary doctor because the regular gastroenterologist there can't figure it out. I had to beg and plead to see the Hepat. doctor. It was suggested to me that it could be Sphincter of Oddi Dysfunction Syndrome, but because my Amylase and Lipase levels always come back normal, they really do not feel that is what it is. They are hesitant to do the ERCP with manometry to test the pressures in the bile ducts because it can cause you to develop Pancreatitis. HELP... I am going crazy, has anyone had this same problem and what have you been told. I have been doing this for well over a year and am at my wits end.

[DGracie]

Also, I follow a low fat diet as best I can. I take BP medicine, folic acid, Prevacid, and just started Crestor. I am not what you would consider extreme over weight, could lose about 30 lbs. Kind of hard though when you can't eat a lot (gastroparesis), I can't eat broccoli, lettuce, things like that because they make the pain worse; so I eat a lot of plain starchy foods.

[jcw1212]

I have also had some issues that sound somewhat like yours...and like you they will NOT do a ECRP to see if all is well even though i have pain there (2 years now). I also have autoimmune symptoms (joint pain, hair falling out, fevers, fatigue muscle aches), but other then my ASCA IGG/IGA (these came back very HIGH) and Gliadin Antibody tests everything else is normal, even my colonoscopy, because they though it was Crohn's..GO FIGURE!!! Your iron issue...the prevacid can actually cause you to not absorb iron the right way!!! I found that out and quit taking it, because like you i'm anemic!! I totally understand your frustration. I feel like i'm gonna have to almost kick the bucket before they figure it out!!!

[DGracie]

Due to insurance issues that came about yesterday, I will be switched to Nexium; so we will see how that goes. What type of autoimmune tests have you had done, because on occassion I will have issues with body aches, headaches, fever (which normally I carry a low temp of about 97, but since all this has been going on it lingers around 99), fatigue (which could be from the anemia, but even when my iron levels are normal I still feel fatigued), I have always had a problem with my hair falling out in excess (but I have tons of hair so never really thought anything about it). I agree with you about almost having to kick the bucket before I get a diagnosis. The doctors just look at me like I am making it all up. I know something is wrong with me, just like I knew when something was wrong with my gallbladder.

[DGracie]

Due to insurance issues that came about yesterday, I will be switched to Nexium; so we will see how that goes. What type of autoimmune tests have you had done, because on occassion I will have issues with body aches, headaches, fever (which normally I carry a low temp of about 97, but since all this has been going on it lingers around 99), fatigue (which could be from the anemia, but even when my iron levels are normal I still feel fatigued), I have always had a problem with my hair falling out in excess (but I have tons of hair so never really thought anything about it). I agree with you about almost having to kick the bucket before I get a diagnosis. The doctors just look at me like I am making it all up. I know something is wrong with me, just like I knew when something was wrong with my gallbladder.

[jcw1212]

I have had many auto immune tests done. ANA, sed rate, c reactive protien, creatine kinase, DNA antibody, SM antibody, RNP anitibody, SSA antibody, SSB antibody, centromere, scleroderma IgG, Ribsoomal, Histone, C3, C4, IgA, IgM, IgG, IgM (a little low), RF,PT Sec, Pt INR, APTT, TSH, Immunodeficiency CDC Panel, C-ANCA by EIA, P-ANCA by EIA, Ferritin BLD is always low. Like i said I've had tons of tests!!! No one can figure me out!!! Though i have ran across some things in my research. That the ASCA IgG and IgA can be positive in Seronegative Spondyloarthritides so I've been reading up on that. Yeah i knew my gall bladder was bad...but they thought i was making it up since the scans didn't show anything, then they took it out...and said "yeah it was diseased". UGH!! Its frustrating.