Zollinger Syndrome

Discussion in 'Discussion Group' started by englishbullymom, Aug 4, 2009.

  1. englishbullymom

    englishbullymom Well-Known Member

    Is anyone familiar with or know anyone diagnosed with zollinger-ellison syndrome? My mom has just been 83% positively diagnosed (whatever that means) and there's not a whole lot of specific info available given its rarity. Pet scans and nuclear tests are scheduled today and tomorrow to get definitive answers, but just trying to get some real life input in the meantime.
     
  2. kdc1970

    kdc1970 Guest

    I've never heard of it, but my thoughts and prayers are with you and your mom. :grouphug:
     
  3. Jester

    Jester Well-Known Member

    Sounds like something that could be pretty serious, although I hope and pray that it isn't. I know it may seem kind of early, but I'd definitely get a second opinion.
     
  4. englishbullymom

    englishbullymom Well-Known Member

    It definitely is serious Jester and thank you for the advice. That's been in the back of my mind also. Unfortunately, because of the high cost associated with the diagnostic test and the fact that insurance companies don't cover it, this was looked at as a last resort by my mother's gastro specialist up at Wake Forest Baptist Hospital. She has been going through *&%$ the past 2 years with multiple docs/tests and this one finally thought to check her gastrin levels and do the hormone tests. All the other docs wanted to wave it off as IBS, celiac, ulcers or complications from her Rheumatoid Arthritis meds so everything has pretty much been ruled out already. I guess we should be glad it was even discovered given that less than 3 in a million Americans have it. I now wonder if more don't have it but are wrongly diagnosed?? The PET scans will give the definitive diagnosis and whether or not there are tumors, but the complicated blood/hormone test pretty much did it with her gastrin levels reading over 800 when normal is less then 100. Though she is still holding out for that 23% negative and no tumors...gotta love her positive outlook!!
     
  5. Jester

    Jester Well-Known Member

    Well, let me suggest a local gastro physician at least to consult or perhaps another doc in the practice. Dr. Morris Pollock in Raleigh is a really thorough doctor. If he can't be seen, one of the other doctors in the practice maybe could, especially on a doctor's referral. They are located over near Rex on Atrium Drive.

    I would request that the doctor that she is seeing help her to get a referral immediately to another specialist to weigh her options and by all means, make sure that all pathology reports and X-rays go with you to the doctor or are sent to the physician giving a second opinion.

    I do hope that she gets at least relatively good news on this diagnosis. Keep us posted.
     
  6. englishbullymom

    englishbullymom Well-Known Member

    Thank you Jester. I will definitely push for her to get some second opinions before she starts any kind of treatments. THey may recommend the same options, but at least if it doesn't go as planned you know that your options were the same anywhere and it isn't a shoulda, coulda scenario. I appreciate the recommendation very much.
     
  7. Jester

    Jester Well-Known Member

    You're welcome. Best wishes to your mother.
     
  8. God'schild

    God'schild Well-Known Member

    I usually look on webmd.com. I get alot of basic explanations. They are not diagnosises by any means and ALWAYS get a Doctor for determination. But I find it resourceful for basic knowledge. I looked up Zollinger Syndorme and the link is below. Best wishes and prayers for you and your mother!


    http://www.webmd.com/cancer/zollinger-ellison-syndrome
     
  9. cathy0517

    cathy0517 Well-Known Member

    My Mom was given the same diagnosis and was started on Octreotide injections, her gastrin level was well over 1,000! I was just not happy with the progress she was making and her doctor wasn't able to give us satisfactory answers to our questions. I finally complained to her doctor so much that he agreed to send her to a specialty hospital for tests. I was living in upstate NY at the time and she went to Boston for her second opinion. After all the tests were done and evaluated, Boston asked her to stop taking Nexium. Her other doctors had increased her nexium as her symptoms increased. She stopped taking Nexium and her gastrin levels began dropping immediately. Please have your Mom get a second opinion if you are at all uncomfortable with her diagnosis. Since Zollinger Ellison is so rare it would be well worth the second opinion to rule out another cause of her symptoms. My mom was experiencing diarrhea from 10-20 times a day, she was afraid to leave the house and had abdominal pain constantly. I know how hard it is to be an advocate for your parents health but it sounds like you are doing the best you can. My thoughts and prayers are with you.
     
  10. englishbullymom

    englishbullymom Well-Known Member

    Thanks for that info Cathy. That is good to know should her docs start her on either of those meds. So far, her specialist is holding off on choosing a treatment until her PET scans and the nuclear tests come back to show if tumors are present. So I take that as a pretty good sign that he is not just jumping to conclusions. My father has been with her at all of the appointments and knows how to "navigate" the system and isn't afraid at all to ruffle feathers or ask questions. My mom is only 58 and Dad is 55 and neither of them are afraid to speak up. In fact, both of them have high opinions of this specialist and from the research I've done, he is one of the best.

    So was your mother already on Nexium and that causing the high gastrin levels? Was the zollinger diagnosis thrown out in the end? The only drug my mom is already on is embrel injections for her rheumatoid arthritis. I will ask if her doc has considered if that could possibly be causing the high production of stomach acid. Oh and my mother is afraid to leave the house as well or even eat some days. Right now, she is surviving by taking imodiums two at a time, multiple times a day. The docs are fine with that for now. Thanks again for sharing your experience.
     
  11. cathy0517

    cathy0517 Well-Known Member

    Yes, they did change my mothers diagnosis. After having all the tests, CT etc. they never found a tumor, that was one of the reasons we questioned the diagnosis. My Mom is 81 and has many cardiac issues so her docs kept trying to tie her symptoms to that. She was taking Nexium before her symptoms started, it wasn't until after symptoms began that they increased her dosage. I am glad that your Mom has doctors that she is comfortable with, that makes all the difference. My Moms docs were never able to answer our questions and never made any effort to try to find the answers. Let me know how your Mom is doing. Again my thoughts and prayers are with you.
     

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