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nicoleny
@nicoleny

Posts: 14
Joined: Aug 23, 2018

Undiagnosed for 3 years

Posted by @nicoleny, Thu, Aug 23 3:49pm

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

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.

Hi Stacey,
Thanks for responding. Have you gotten a second and third opinion? Surgery on the pancreas can be scary, I would make sure you see a few doctors that are all in agreement before moving forward with that. I am not sure what rifaxamin is.

@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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@nicoleny One of the earliest organs to be invaded by mis-folded proteins, especially in autoimmune Amyloidosis is the pancreas. I had a cyst on mine for a time, but it went away eventually, and the whole pancreas simply grew about 15%. Suggest your doc order a sFLC(c)Bindings assay. Any result over 1.4 mG/serum deciliter is pointing a good direction to look, and anything over 2.0 mG/deciliter says you have some mutation of the disease of misfolded protein in your body. Mayo and all class 1-AAA clinics and NIH have lots of stuff on it.

@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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@oldkarl thank you for the feedback. I am surprised the pancreas specialist I saw in Boston didn't mention that. Would there be other symptoms? What type of test is it – invasive? blood test? What type of doctor do you see for that? How did they find it on you? Thank you so much.

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!

When working through the steps toward a difficult diagnosis, always remember that you may need to push and pull a few years to get it. 10 to 20 years is not all that unusual, and it is nearly always filled with blunders. But remember also that you are the one finally responsible. I have had 4 1-AAA Clinics refuse to see me after their own labs said they knew what I was fighting. One 1-AAA liver department refused me after I tested in Stage 4 liver fibrosis. A cardiologist refused after he said he saw hundreds of Gelsolin patients every year, and I did not look like any of them. After all, about one person in two million persons tests positive for Gelsolin every year. Busy Doctor.

@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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I will write more later today or tomorrow. I have these symptoms and a few more to go with. I will share what I have learned and find out what you know about why you have these symptoms.

@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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@sita My main symptom is pain that feels like I am being stabbed from the inside out. It's in my upper left abdomen mostly but times it does radiate to the right and to my back. I also frequently have diarrhea, almost all the time. Have the doctors suggested what they think it might be for you?

@c130

I will write more later today or tomorrow. I have these symptoms and a few more to go with. I will share what I have learned and find out what you know about why you have these symptoms.

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@c130 thank you. I look forward to reading your response.

@c130

I will write more later today or tomorrow. I have these symptoms and a few more to go with. I will share what I have learned and find out what you know about why you have these symptoms.

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Yes, please tell me what you know about the neurological symptoms! Many thanks, Sita

@nicoleny

@oldkarl thank you for the feedback. I am surprised the pancreas specialist I saw in Boston didn't mention that. Would there be other symptoms? What type of test is it – invasive? blood test? What type of doctor do you see for that? How did they find it on you? Thank you so much.

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@nicoleny the sFLC(c) Blandings Site assay is a simple blood test. There are several good labs in the country who can process it. Sloan-Kettering, ARUP, Quant,Stanford, Boston, Mayo. You will want to see someone at one of the top clinics. SK, Boston, Mayo,UofUtah, MD Anderson, See a hematologist/oncologist. If they say no, change doctors.

@oldkarl

@nicoleny the sFLC(c) Blandings Site assay is a simple blood test. There are several good labs in the country who can process it. Sloan-Kettering, ARUP, Quant,Stanford, Boston, Mayo. You will want to see someone at one of the top clinics. SK, Boston, Mayo,UofUtah, MD Anderson, See a hematologist/oncologist. If they say no, change doctors.

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@nicoleny I forgot to add, you might check out my long story, at https://bit.Ly/1w7j4j8 "Amyloid"

@sita

Yes, please tell me what you know about the neurological symptoms! Many thanks, Sita

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@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?

@oldkarl

@nicoleny I forgot to add, you might check out my long story, at https://bit.Ly/1w7j4j8 "Amyloid"

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@oldkarl Thank you so much for all of the information. Out of curiosity – what makes you think this could be the possibility of what is happening with me? I was reading through your story and so far, the only symptoms I have on a regular basis are upper abdominal pain, loose stool (constantly) and recurring mouth ulcers.

@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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