Is it ZOLLINGER-ELLISONS SYNDROME?

Posted By Melonie Varnell on October 01, 1998 at 00:52:32:







Do I have crazy things happening????? This past december I started having nausea..The doc's gave me phenegran and put me off, I have also been having blood suger problems..mainly I swing high and low..Oh, yes I am 26 yr, have neurocardiogenic syncope which I take lopressor for, and live a good life, do not drink, do smoke, took 160 DURACTS, have severe migraine headaches (have since childhood), no longer can take Imetrex now back to pain pills..needless to say in December I quit taking duract because it did not work..I was sent to a endocrinologist about blood sugar (serious family histoty of diabetes) he wanted to put me on Rezulin but since I was not eating thought would not be good idea....I went on for awhile with the nausea with no answer on it then at the end of Febuary I had extreme pain under right rib, extended abdomin (abdomen), extreme pain in lower right quadrant...Doc's found an enlarged liver and spleen with ascites, ovarian cyst..lots of test...CA-125 was high (130)..had a hysterectomy on March 3 (the 7th surgery for GYN problems..Noone ever could explain why I had this fluid...I counld'nt move air in the lower right lung because of the swelling..was better for  a while..still nausea...will vomit without phenegran..have pain under both ribs, have a spasm in the mid epigastric region..all C.T.'s and ultrasounds show nothing except for times my liver seems to swell up ( I know when it is swollen because I feel it..feels like someone is crushing me by squeezing their hands around my rib cage....my gastrin level showed 108 my lipase was slightly elevated, I am now anemic..I am taking 200 miligrams of phenegran a day plus 300 mg of zantac to help the pain in my stomach, have lost 17 pounds since Febuary..this is the thinnest I have ever been...and it is very hard for me to lose weight..I get constipated alot..I have gotten to where I do not eat..things are better this way..meat is the worst on me..but when I eat it makes me sick sick..I mainly eat jello, salads, pasta, I don't really have an appetite but do get hungry...When my pain gets extreme I do not want to eat at all..This past month I have been running a low grade fever...will take anti-biotics, but do this without knowing cause of fever...My hysterectomy showed hemmorragic cysts & other cyst in my left ovary ( right ovary was taken oout in Oct 97) my uterus was enlarged and had some polyps but were not to the actual cancer stage yet..My GYN who knows me and did my first ab surgery when I was 16 has worried about me ever since because he believes there must be something somewhere else....because of the test...I agree because why was my liver and ascites there...My CA-125 level is down to 9.9 six months after surgery...My doc is now talking about Zollinger-Ellison Syndrome...I am freaking out because there so casual about this...I have a 6 yr old and 4 yr old..who need mommy...I am afraid if they keep messing around if I do have a tumor hid elsewhere I will die before they find it..I live in a small town in Oklahoma and can not get much help out here..Doc's are referring me to OKC but will take longer to get me in..I am thinking about going to the ER in OKC  and hope someone will admit me and run all test to find my problem..The lady that did my last ultrasound seen a spasm she called it she said it looked like a spasm that came up into a mass right above my pancreas area..my bowels havn't been normal for a while now..I will have black stools then maybe green..I have seen blood in them at times..but Doc's don't know..my bowels also have fecal fat in them..Without any pictures showing she has this I do not feel like they are taking me serious and obviously why I am still sick...I stay tired,,,we have good insurance and make good money so niether is a problem...I have seen a gastroenterologist but he doesn't know what to do..he can not run the test here..so he is going to call OKC to try and get me in faster...but still will take a while..I can't live like this for to much longer..I just need some serious help..You can also feel my pulse major time above that mass thing that seems to radiate pain to my ribs and around my spine..Prevacid helps the pain so does zantac..But I can notlive on these drugs forever...or continue to lose weight..my teeth are not looking good, went to dentist and he found a spot on my gums that he said needs to be taking off and sent to lab if it doesn't go away or gets bigger...it's getting bigger...I have been to college and initially studying the medical field and have knowledge about conditions,thus why I know something is seriously wrong...and why I can understand  most of their mumbo-gumbo... PLEASE HELP.............test done....endoscopy, ct's, u.s.'s barium x-rays...all gallbladder test...all normal except for liver enlargement in some.....