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nicoleny
@nicoleny

Posts: 14
Joined: Aug 23, 2018

Undiagnosed for 3 years

Posted by @nicoleny, Aug 23, 2018

Hello All… I am 35 years old and I suffer from chronic intermittent abdominal pain. I have seen over 20 doctors in 3 different states and have had the diagnosis of IBS, however, part of me can't help wonder if it is my pancreas that is evading diagnosis. This has been happening for 3 years now. I have had several hospital visits for pain, a gallbladder removal, several CT scans, liver biopsy, pancreatic function test, several ultrasounds, fecal fat tests, and all these tests have come back normal, my lipase or amalayse levels have never been elevated. I did have an EUS done on my pancreas, which showed 4 out of the 9 criteria for chronic pancreatitis. I then took those findings to a highly regarded pancreas specialist in Boston who had performed my pancreatic function test. He said based on the pancreatic function test coming back normal and only having 4 out of the 9 criteria for chronic pancreatitis, that he did not think it is my pancreas. My pain is typically situated in my left side below and under my rib cage. The pain tends to be intermittent, but I do get orange loose stools with it. I typically get mouth ulcers on and off and I get so tired during flare ups. Just seeing if anyone has any input/feedback as I feel I received the diagnosis of IBS because nothing else is showing up. Thank you.

REPLY

@oldkarl

@nicoleny A few things. Probability of multiple organs and tissues involved. Pancreas 4/9. Slow growth of problems. Left side pain. And just guessing that your sFLC(C) will be toward the high side, but not over the top. Then when you you take it again in another year or so, it will be a little higher for the kappa light chain protein. Then it will continue to develop, but you will watch it grow another year or two, and do the sFLC again. You probably have developing liver non-alcoholic Fibrosis. Mine is stage 4.

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@oldkarl thank you. I am definitely going to bring this up to my GI.

@oldkarl

@nicoleny A few things. Probability of multiple organs and tissues involved. Pancreas 4/9. Slow growth of problems. Left side pain. And just guessing that your sFLC(C) will be toward the high side, but not over the top. Then when you you take it again in another year or so, it will be a little higher for the kappa light chain protein. Then it will continue to develop, but you will watch it grow another year or two, and do the sFLC again. You probably have developing liver non-alcoholic Fibrosis. Mine is stage 4.

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@oldkarl thank you again. I did have a liver biopsy 1 1 /2 years ago because all of my liver function blood tests were fine but I had an unexplained enlarged liver. When the did my biopsy it all came back normal.

@nicoleny

@sita I don't think I experience any of the neurological symptoms. I get headaches from time to time but I would say that is the most of that. So far at least. What kind of neurological symptoms do you experience?

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Hi
The neurological symptoms are blurred vision and neuropathic pain in my extremities. Lack of sensation may fall under that heading, I also have balance problems and dizziness. Best, Sita

@sita

I have the same pain. Additionally I have had fatigue, nausea and gagging, weakness in arms and legs, visual blurring, and brain fog. I also have neuropathic pain and lack of sensation for bowel and bladder functions. Do you have other symptoms besides the pain in your side?
Hope you get a diagnosis soon!

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My problem comes and goes…I can go months with no problem then the symptoms will start. The Docs at Mayo Clinic call these episodes “spells”. When I have one of these "spells" I have nausea, discomfort on ride side under rib cage (not pain, just discomfort), weakness all over – especially in my legs – they feel rubbery/weak, I feel light headed/dizzy, and sometimes I have acid reflux and bloating. When these symptoms first started in 2013, my BP/Pulse rate would be very high during the episode. Even now when I’m having a spell my BP can be elevated, but I have medication now and have been told how to increase the BP medication if this happens. These spells have lasted for a few days – 4 months.

I had gall bladder surgery, and they checked my liver and pancreas – said everything looked good. I have had every test imaginable trying to determine what causes these episodes, and they can’t find a cause for my problem.

For me, it seems if I maintain a healthy weight, eat real food…stay away from processed food, minimize the sugar, gluten and dairy I can prevent the “spells”. When I first started having the problem I would reduce my food intake due to the nausea. Because I was eating less, and eating healthy I would lose weight and gradually the symptoms would go away. Throughout the last 5 ½ years I have noticed that if I start eating the wrong things and gain weight, I can have an episode.

About a week and half ago I started having the symptoms, but I “fell of the wagon” a while ago and was eating things I knew I shouldn’t, and gained weight. It had been over a year since I’d had a problem. I don’t know why I do this…after 5 ½ years of analyzing my situation I know better.

There is something called “Non-Alcoholic Fatty Liver”. My symptoms are comparable to what I have read on this condition, but there is no test I’ve had that shows I have this. According to what I have read, healthy weight and eating is the answer to controlling this condition. I look forward to hearing from others who have experienced similar health issues.

@stacey2

Hi. I also have the same dull ache/pain under left ribcage . Have had several tests. The only result was "cysts on pancreas" which really freaked me out. Dr gave me another prescription for rifaxamin ( 3rd time) and said i might need to have them removed. Surgery on the pancreas seems pretty scary. Im not sure i want to keep taking rifaxamin.

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@stacey2 My husband by accident found from a virtual colonoscopy.. basically a colonscopy done with a fluoroscope… that he had a tumor on his pancreas. They thought it was a cyst. They did surgery and they took about half of his pancreas. It was cancer. He recovered well. He is diabetic, but that is better than dying from cancer. Funny.. his doctor said he does not know why he ordered the virtual colonoscopy… he usually just performs another regular cooonscopy in a few months. My husband had failed to clean out for the colonoscopy. His doctor said rarely is there symptoms of this type of cancer tumor. It is usually detected in an autopsy. I have forgotten the name of the type of tumor.

@c130

My problem comes and goes…I can go months with no problem then the symptoms will start. The Docs at Mayo Clinic call these episodes “spells”. When I have one of these "spells" I have nausea, discomfort on ride side under rib cage (not pain, just discomfort), weakness all over – especially in my legs – they feel rubbery/weak, I feel light headed/dizzy, and sometimes I have acid reflux and bloating. When these symptoms first started in 2013, my BP/Pulse rate would be very high during the episode. Even now when I’m having a spell my BP can be elevated, but I have medication now and have been told how to increase the BP medication if this happens. These spells have lasted for a few days – 4 months.

I had gall bladder surgery, and they checked my liver and pancreas – said everything looked good. I have had every test imaginable trying to determine what causes these episodes, and they can’t find a cause for my problem.

For me, it seems if I maintain a healthy weight, eat real food…stay away from processed food, minimize the sugar, gluten and dairy I can prevent the “spells”. When I first started having the problem I would reduce my food intake due to the nausea. Because I was eating less, and eating healthy I would lose weight and gradually the symptoms would go away. Throughout the last 5 ½ years I have noticed that if I start eating the wrong things and gain weight, I can have an episode.

About a week and half ago I started having the symptoms, but I “fell of the wagon” a while ago and was eating things I knew I shouldn’t, and gained weight. It had been over a year since I’d had a problem. I don’t know why I do this…after 5 ½ years of analyzing my situation I know better.

There is something called “Non-Alcoholic Fatty Liver”. My symptoms are comparable to what I have read on this condition, but there is no test I’ve had that shows I have this. According to what I have read, healthy weight and eating is the answer to controlling this condition. I look forward to hearing from others who have experienced similar health issues.

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Thanks for responding.

@nicoleny

@oldkarl thank you again. I did have a liver biopsy 1 1 /2 years ago because all of my liver function blood tests were fine but I had an unexplained enlarged liver. When the did my biopsy it all came back normal.

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@nicoleny Just to reinforce. All Amyloidosis is progressive and, eventually, fatal. It may not reach the fatal level until age 90 or 140. But eventually it will take you if nothing else does. It just depends on how it starts and the pattern it holds, and how you block it. The enlarged liver means only that you should 1) have a liver biopsy, and do it again in another year, and 2) have the sFLC every year, and if it shows above the reference range for Kappa OR Lambda OR both, do the serious testing as soon as possible as noted in my paper or named by Mayo or other 1-AAA Clinic.

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