I had a CT scan of my pancreas and it came back abnormal. As of yet we don't know the reason. They are thinking autoimmune pancreatitis. Waiting on more results. However can I ask other people. Has pancreatitis ever caused anyone neuropathic pain in surprising places? Possibly due to malnutrition.
Many thanks
Hello? Anyone?
I am sorry about your troubled pancreas. I have neuropathic pain in face, head, neck, legs, feet, and hands. I do not know if the pancreas is the culprit though. The vegas nerve and celiac plexus supply nerves to all of the gastro stuff in the gut along with the pancreas. I have had a celiac plexus nerve block to help with the pancreas pain but it did not do much. Your remark about malnutrition caught my eye though. I have had long term Vit D deficiency, and I have had long term weight loss. I was thinking the malnutrition was causing more of a electrolyimbalancence that causes heart palpitations. Either way, the mose important medicine are pancrealipase such as Creon, and these help digest food and get the vitamins you need.
But if the pancreas causes insufficiency then that would mean you can't absorb. Could that be reason for your pains?
In my case, inflammation has caused the pancreas to become damaged over time, hence pancreatic insufficiency. But the inflammation can be very painful, especially during an acute episode.
But what caused the inflammation
hi , it’s all very stressful knowing something is wrong with your body and not knowing why. I was diagnosed last year with severe EPI, it has been put down to autoimmune system. I have Sjögrens. All the CT scans, MRIs etc showed a normal pancreas,
I am not sure if this is helpful feedback, as everyone is different, but I thought you should know. I got fobbed off for a long time, due to other chronic conditions I have, my symptoms were all written off.
In the end a dietitian suspected EPInand pushed GP to do a test. By then, I was a wreck, now still trying to piece it back together and work out how to live with this condition.
I'm dealing with this right now.
I'm sorry that that has been your experience with your GP. My experience with mine has been similar. I have also been diagnosed with EPI. I realize that the health care system in America is very ineffective in many cases in dealing with chronic conditions. It's typically great in responding to acute emergencies. Because of that, I see I've got to be proactive, be an advocate for myself and "order off the menu," so to speak, to the extent that I can by getting referrals to dieticians, as you have done, and so on. Chiropractors, if you can get referrals to them, might also be helpful since they often take a holistic approach toward health.
In addition, if you can find a medical doctor who practices "functional medicine" on your health plan, that would be helpful. (You might have to pay for functional medicine appointments out-of-pocket. But if you can afford it, it would probably be worth it. One or two appointments might be all that would be needed. For a while, a functional medicine doctor in my city, San Antonio, Texas, accepted Blue Cross/Blue Shield Medicare Advantage PPO insurance.)
Another idea: You might want to change GP's to see if you'll have better experience with another GP. You might wish to write letters to GP's on your health plan, explain your diagnosis and ask if he or she would be open to your approach to responding to your diagnosis. (Nurse practitioners and physician assistants can be selected as primary care physicians on my health plan, Scan Medicare Advantage Insurance HMO.) These individuals tend to be more open to alternative options of health care.
A man who has a YouTube channel that I really like is Dr. Suneel Dhand, M.D. He's a physician in private practice in America, and, as an insider, he has some very insightful (and critical) things to say about our health care system. His video, "Why I stay away from doctors," is pretty illuminating. Below is a link to his YouTube channel where you can search for this video. For some reason I couldn't copy and paste the link for that video successfully. youtube.com/@drsuneeldhand
Best wishes as you advocate for yourself and navigate through the health care system.
P.S. Here's a link to Dr. Dhand's video on why he wants a nurse practitioner or physician's assistant as his primary care physician. youtube.com/watch?v=O8wMvKS...
A CT scan on my abdomen for something else highlighted I had severe calcification of the pancreas. Total shock as I had no symptoms.No one knows what caused it other than many,many years ago my gall bladder was removed but not conclusive. I was tested to see if it was another immune disease as I already gave one but no. I have EPS deficiency but cannot tolerate the enzymes as it's pork based to which I'm intolerant too. Hence no treatment and just have to get on with it. Not ideal and the Consultant is a drip
What was your experience with your pancreatitis diagnosis? 
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