Is it Pancreatitis?
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After 10 years of debilitating symptoms and no diagnosis I hope to locate a person who had similar experience but better luck with doctors, tests and symptoms management. Judging by pains below rib cage radiating to the back, inability to eat fatty, greasy, spicy, fried foods, nausea after meals, history of acute pancreatitis 12 years ago etc... judging by all that I am quite sure that what I have is some sort of chronic pancreatitis. Yet there are additional symptoms that do not fit too well into the above diagnosis but occur in timely relationship to the pancreatic ones. Simultaneously with the onset of the illness 10 years ago the following symptoms started: unusual sensitivity to chemicals such as perfumes, paints, detergents, car exhaust, etc., ringing the ears, sensation of “pins and needles” on left side of the body, excessive salivation, stomach cramping, “brain fog”, confusion, memory problems, depression, inability to concentrate, sleep, sensation of “being wired” and so on. There is also strange “cyclic” symptoms that appear to follow acute stages of pancreatitis but nearly vanish after a while such as migrating chest pains, weeks and months of frequent urination (every hour day or night or more), bitter, salty or burning sensation in the mouth, etc. Only one thing makes any difference to the above – strict diet, and even the diet can only reduce the severity of the symptoms, but can’t eliminate them.
If you have experienced something similar and found ways to manage your life under the illness your advice thoughts and suggestions on the issue will be greatly appreciated. Best regards.
Andrew.
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Guest andrew60537
Posted
Reefsider andrew60537
Posted
Andrew there are many ailments/diseases that fit your symptoms that only a really good medical pro/team can determine so my input is purely based on my experience.
I have a rare genetic disease called Porphyria, there are 8 types that I'm aware of with each having either slightly or totally different symptoms. I have an acute type and have nearly all of the symptoms you mention plus a few. Attacks can be life threatening and whilst I'm not saying you have one of the Porphyrias, I don't think you should ignore your symptoms regardless.
Porphyria is hepatic in origin so I've never been able to go near alcohol and yet here I am with Chronic Pancreatitis as well. I did a bit of research after CP diagnosis and discovered (in the only study I could find where pancreatitis was a focus) that Pancreatitis can be a rare complication of Porphyria so there you go, there's an indication that the two can be related. As I said that's just me.
Porphyria is not understood by most including medical professionals and as my experience has demonstrated most doc's won't touch me with a barge pole. Testing is tricky and specialised and has to be performed at specialist labs, you can't just ask your local GP to write up a request and go to the local pathology lab.
Andrew there's a totally unprofessional test that you can do and doctors do it too. It's not conclusive by any means but worth doing when next you're in the grips of an attack. Collect some urine in a clear jar, not a lot needed, perch it somewhere sunny and see if it changes colour. Can change quickly or take a few hours. If it changes I'd definitely ask your doc to refer you for further investigation, probably at one of your large teaching hospitals usually, there's usually one which has a specialist who knows about it. As I said whilst I share your symptoms plus a few I'm definitely not saying you have Porphyria but something's amiss and I'd urge you to pursue reasons why you have those symptoms. Good luck.