Differential Diagnosis

No, due to financial constraints MRCP is outside of my choices.

Yes, and the results are negative

Hi Linda, thank you for your reply.

After years of unhelpful visits I trust doctors' words less now. I think it is possible that internal secretion of inflamed pancreas gland produces hormonal changes that are responsible for some of our symptoms. I wish there was a medicine or procedure that could elevate or shorten periods of inflammation that cause such havoc in our lives. Strict diet and fasting are the only ones that work for me, but even they take days or weeks to take effect.

Kind regards,

Andrew

 

I take Forceval for the malnutrition 

My dietician from the hospital prescribed them as my weight plummeted and my hair started falling out loads.  I hope someone can help you soon

Thank you Linda,

I have similar problem with weight and hair. I take multivitamins but it is hard for me to judge their effectiveness. I will look into Foceval yet significant shortage of fats in my diet is likely to be be more pressing issue than lack of vitamins or minerals. Doctors don't seem to be much of help in my case (10 years of frustration and unreasonable bills without a single remedy) so my main hope at this point is to figure with help of people in similar situation what can be done to manage the illness.

Best wishes

Andrew

After thinking about it for a while I consider your observations quite interesting. I've also noticed this curious fact that mental state of depression, irritation and confusion may foretell aggravation of pancreatic symptoms by a day or two. I question your doctor's explanation regarding low blood pressure, since logically it is inflammation of pancreas due to improper diet that causes havoc in classic CP patients, including changes in blood pressure, not the other way around. So there may be some additional aggravating factor that triggers pancreatic symptoms, making our case more complicated and indicating that the culprit for our symptoms may not be malfunction of pancreas alone. I will continue this thread as new topic - for I want to see if other patients have the pattern.

One more thing regarding it. I've noticed that a day or two prior to the onset of depression (and accompanying problems with mind for and urination frequency) my symptoms are at the lowest. In other words I feel the best just prior to depressive streaks and there is definitive cycle to this merry-go-around of symptoms: several weeks of recovery followed by few days when symptoms are at their lowest followed by depressive streak followed by strong pancreatic symptoms (nausea, pain, general weakness) and then the cycle repeats. Please reply if the pattern sounds familiar.

I take enzymes and they do help some, but still do not allow me to eat balance diet. Most food that contain protein and fat trigger the symptoms. So malnutrition is a problem. I never drank alcohol and my CP was likely caused by mushroom poisoning 12-15 years ago. I do keep records - but my merry-go-around of such atypical symptoms as mind-fog, confusion, poor concentration, memory loss, colored noise in visual field, ringing in ears, lower back pain, edema, frequency of urination, etc - only add to the perplexity - I've been through this pattern: "minute diet violation-two weeks of symptoms-steady recovery on a diet" so many times, so I know exactly what to expect next, but neither myself no the doctors can make logical sense what is happening and what can be done about it.

Thank you for sharing your thoughts

I though of the above possibilities and still testing some of them, but it is unlikely to be ordinary intolerance since 95% of food items trigger symptoms. To make things more mysterious - there were instances in the past when all of a sudden I gained ability to eat some of the items I could not eat earlier but would loose this ability later as mysteriously. Antihistamines do not help, so it is unlikely to be an allergy, antibiotics, untifungals or probiotics do not make any noticeable difference either. Endoscopy of stomach did not reveal any pathology. I regularly do not use any medication above those that I occasionally use for diagnostic purposes.

thank you for your suggestions, Human Being.

Did you have pain before? What did you used to cure that pain?

Thank you for reply Nick,

Yep, it has been 11 rough years and future does not promise to be any better unless we find some sort of remedy on our own or by collective effort. I will look into grapefood seed, but I have to be fairly careful what I try, any mistake is causing several days or weeks of moderate pain and significant discomfort - the worst of which are mental states that do not allow me to work or feel like myself - I really hate that part when life and mind get replaced by symptoms. But fighting attitude (if you have energy to master one) is better that succumbing to depression altogether... so we should resist the illness as long as we can - strictly speaking it the only reasonable choice we have.

Look into enzymes issue. You doc might be wrong - it is standard practice to proscribe enzymes to CP patients. I also don't believe it would cause your body to produce enzymes. Millions of people take enzymes as food supplements without ill effect. Many foods contain naturally occurring enzymes as well. Look into medical steadies on the subject and ask people who actually suffer from the illness their opinion.