← Return to Would Feel comforted if others share similar autoimmune symptoms

Discussion
Comment receiving replies
@gman007

Hi Rose! I am glad you found this site and I hope you not only find support, but some actionable help for your symptoms. I am no as isolated as you are, but am in a rural area where knowledge of pancreatitis and volume treatment is very limited. It was thought for many years to be an alcoholics disease and received very little attention from the medical community because it was believed that most of the patients were simply going to gradually kill themselves. I happen to be one who was a functioning alcoholic with a congenital defect in my pancreas. I could have remained asymptomatic for life from the defect as many do, but I, almost literally, poured gas on a fire, and was hospitalized the first time in 2006 - almost exactly 12 yrs. ago - with acute pancreatitis. to shorten things up, I had two more hospitalizations and lots of testing before I was diagnosed with chronic pancreatitis. I had stopped drinking after losing my gall bladder and still having acute attacks - God only had to hit me with a 2x4 twice to really get my attention. My second hospitalization lasted 15 days and for the first time the doctor said death in discussing my symptoms and life style. I have a local gastroenterologist who monitors my conditions and send me to the Medical University of SC when my pain becomes unmanageable. This is a high volume center (not to the extent of Mayo, but widely recognized as having some of the best docs for my condition). The reason I say high volume is that it is incredibly important, in my humble opinion, that you find a doctor who sees your condition more than once every 2-3 months. I don't know that it is possible, but if you could get to the Mayo clinic facility in Jacksonville FL, they typically have a high volume doc in almost everything or something that would at least touch on your condition. My understanding is that they see you, perform every kind of test potentially necessary, and have a committee who evaluates your symptoms and what they have been able to learn and send you back home with a diagnosis and treatment plan. They can speak to this better than I, but a facility that works in this manner would seem to be the best for you and your where you live as you could probably have a local doctor treat you in the manner the high volume center recommends. beyond that, I think I would try to circulate your story in the medical community where you live and maybe a doctor that you have not seen would have a light bulb come on for them. I know there is a doc somewhere near you who would love the challenge because they do what they do to make people feel better, not for accolades or economic security. I have met many of them, so keep searching and as John suggested, do as much research as is possible on your symptoms. I am not boasting, but I suspect that I know far more than many local docs about the pancreas and pancreatitis. If that is not their field of specialty, that is probably as it should be as it is my body and life that I hope to prolong. All the best to you and please keep us updated.

Jump to this post


Replies to "Hi Rose! I am glad you found this site and I hope you not only find..."

Hi gman thanks so very much for the information that you have related to me.It was definitely informative as well as inspiring.However, I would like to inform you that as recent as today some break through was actually made. One day after I left the french island I was called this morning to be informed that the doctor had received some results. The result is being forwarded to my local general practitioner so as soon as tomorrow I should visit my doctor to know the diagnosis. I will definitely keep you updated on the latest development.

Thanks once again for the tremendous support!

Rose, that is incredible inspiring news. Just from an emotional viewpoint, it is so relieving to finally have a diagnosis. Sometimes they are exactly what we were hoping to hear, but even if it is not, we at least know what to attack with all of our energy that may have been misplaced before. A prayer that get great news or news that gives you direction you have not had. Let us know when you are comfortable doing so.
Gary