pain... not yet diagnosed.

[khaz22]

2020/2021 was first time I experienced the pain.

Lasted approximately 6wks.

ER, doctors (primary and Gastro) could not find anything all tests came back fine. I felt crazy like I was loosing my mind. I think they thought it was all in my mind.

Fast forward to 5/11/23. Began having the same symptoms again... labs are coming back normal

I did have a CT and it did show Mild Atrophy of the Pancreas. However, radiologist states at the top findings are normal, NO INDICATIONS for Upper Abdominal Pain. My previous 2 CTs from 2020 and 2021 did not show any atrophy. ???? What am I missing... what should I be asking, doing?

I feel like this is going to be a long road to find a diagnosis and treatment plan. I feel like while I wait more damage is being done to my pancreas. I feel like I have a ticking time bomb. I'm scared of the unknown and internet research seems to be all over the board. From you have Pancreatic cancer to it can be managed.

This process is draining emotionally and physically especially when you are feeling so unwell.

Most doctors seem to just pay attention to the labs and want to see significant issues with the pancreas. At least the ones I am seeing.

Any tips or advice is greatly appreciated.

[Buttsy]

Hi khaz22,

I am curious about your symptoms, please could you tell me what they are ?

I am under the Gastroenterologist at the minutes ,I have upper right stomach pain under my rib and through to my back and into my shoulder.lots of grumbles in tummy.sometimes feels like bubbling or tingling feeling under my skin in shoulder and rib. I was referred to gastroenterologist due to pain and having protein in my urine.pain now been there for 10 weeks.initially they thought gallstones but ultrasound was normal.so was sent to gastroenterologist.I can not lie on right side or back at night this seems to make it worse and wake me.

To date I had a Gastroscope ,4 biopsy no result yet,but Dr who carried it out said looks okay.

Had CT stomach and pelvis, no results yet .

I understand completely how you feel, I know that feeling of being aware something is wrong with your body or how it works and not getting, the answers and the worry this causes and what the future consequences may be to your health.

I am sorry I cannot help further, other than to say you are not alone!

I feel I may be going through something similar, I mentioned my symptoms last time I was saw my Rheumatologist ,he brushed it off and said probably not related to SS.

My advise is really what I intend to do and that is carry on until i can get an answer,only you know what you are feeling, if like me you are in pain and it’s impacting on your quality of life you deserve an accurate diagnosis.

Also on reading up myself I found information that point to possible problems within lungs ,heart etc if you have upper stomach pain under rib and back.my Dr as sent me for a chest X-ray again no results yet.

Good luck, please let me know if your symptoms are similar.

Take care🤗

[Rgee in reply to Buttsy]

Hey Buttsy, im experiencing the same thing right now(on top of chronic pancreatitis) minus the sleeping issues and I have an appointment coming up with a gastro to see if its my liver...has that theory come up at all for you?

[Buttsy in reply to Rgee]

Hi Rgee,

Not really, but I think it could be a possibility, Had result now of CT abdo and Pelvis all structurally okay. Chest X ray all okay. Going back to Dr today he suggested yesterday over the phone possibly ulcer ! But I had a gastroscope camera when I saw Gastroenterologist about 4 weeks ago now and he said it all looked okay, he took 4 biopsies which I haven’t had results for.

When I first got my Positve ANA centromere result it did say possible systemic sclerosis and maybe PBC.which is liver so don’t know, but had some blood tests done at the time for liver and they came back normal that was about 8 months ago.

Don’t know if this is much help to you, good luck ,hope you get answers, please get back time if you do.

[Rgee in reply to Buttsy]

Will do

[jimister]

I have suffered with upper abdominal pain for 25 years. I've had to stick to a low fat diet otherwise the pain would be unbearable. I am now underweight. The pain has never gone away. Eating sparks it off. For the first few years my blood results showed nothing abnormal but then my Serum amylase started to go up, and has been like that for 12 years. It's not hugely raised but still above normal range. I have had numerous mri, CT scans but my pancreas always appears normal. So the doctors never seem concerned, none of them can give me an answer as to why my amylase is always raised just say your pancreas is normal. No other treatment or help has been offered. I'm just expected to put up with the pain. I asked for a coeliac plexus nerve block but I'm told it only has a 50% chance of working. I do believe that I have a low grade inflammation going on all the time. Maybe try changing your diet to low fat, I've heard pancreatic enzymes can help with the pain I have never tried them myself. Keep off alcohol as that can make pain worse. It is miserable living with this and there doesn't seem there is much that can be done. The docs are only interested if something abnormal shows up on the scans.

[Jackie1947]

I'm waiting to see a Gastroenterologist after 10 months of blood,stool tests and chronic diarrhoea. After all this time finally showed up as severe pancreatic enzyme deficiency. Then a CT scan showed severe calcification of the pancreas ( Pancreatis) a bonus Diverticulor d disease.Stomach pain is crippling so I'm on pain relief,multi vitamins and immoduim. I can't have enzmmes because they contain bovine products and I'm allergic to pork. What a mess. I also have Rhuemtoid arthritis. I was tested recently to see if the pancreas was another immune problem but not. As we know it impacts on our lives. I'm on a low fat diet,don't drink alcohol so that's no problem but p....d off. Had my gall bladder removed 53 years ago. Hate not being in control. Sending virtual hugs to fellow sufferers

[wear1947]

Hi khaz22

Could it be a IBS? An inflammation of the bowles?. I was in pain since last february, pain in the lumbosacral spine and iliac crest Last monday a colorectal surgeon find a solution to an intestinal endothelial inflammation. Hope this could help.

Elena

[Bensfriend]

I had same issues. Nothing CT’s Labs regular ultrasound. Had an endoscopic ultrasound. That found the issue fibrosis on pancreas. On Creon diet adjustments. It took 3 years to get diagnosed 😬

[Shoe2]

khazz22. This post has really resonated with my experience so far

I started feeling very I’ll in January 23 with URQ pain fatigue, odd loose gasy stools and central chest pain that was waking me through the night and pain in mid to lower back and feeling of shallow breath/tight lungs (but not worse when I exercise). Sounds similar. I have had Lots of blood tests and stool tests which showed nothing out of range, several round of tests covered Standrad bloods LFTs and pancreatic function thyroid etc. Sent for ECG and Echo due to chest pain - all normal. Sent for Utrasound of liver, pancreas and gallbladder - all normal. Chest X-ray again normal. Then finally referred to Gastroenterologist when GP said they have not much more testing they can do. Gastro sent me for CT scan - no results yet and Gastroscopy tomorrow. Only odd bloods low B12 (bottom of range) and then MMA up at 665 (2.4 x top of range). Gastro thinks maybe Chronic Pancreatitis. Now also have tingling/ random itching. I feel my body is not right too. Hoping for some answers soon.

Interesting to hear endoscopic ultrasound picked up fibrosis on pancreas where CT missed it.

Hoping you get some answers soon too.

[Shoe2 in reply to Shoe2]

oh meant to say due to low B12 and high MMA now being given B12 loading dose. Feel less tired but rest of symptoms persist.

[Lena5]

Hi Rhee,

I am in Toronto as well and none of the six doctors I have seen send me for endoscopy ultrasound. Can you please if all possible share your doctor’s name and hospital you were in?

Much appreciated.

Lena

[Rgee in reply to Lena5]

Dr. Naveen Arya Oakville

Ask your doctor for a referral

[Tisch2]

hi there. After a test that shows mild atrophy of the pancreas you should find a gastroenterologist or a pancreatologist that performs Endoscopic Ultrasound (EUS).