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Pancreas pain docs not listening!!!!

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Babalishous
Babalishous

It started in April 2014 with a pulsating pain in my throat with electric shock type pains Inbetween my shoulders and mid back, spontaneous pain , that's not set off by anything , just random.... Iv had nausea gone off food for few days... Had blood streaks in sick... Terrible upper abdominal pain which radiated through to my back... Chest pains, now I get pains under ribs on left side and shoulder blade pain when I breath deeply which has got worse over time.... Then I got pains in right side under ribs and right shoulder, I'm now started to get the same pain in right shoulder blade as left when I breath in. Ache between shoulder blades. It's been 9 1/2 months.... Iv had endoscopy to rule out hernia, iv then had ultrasound, mri, which I paid for myself as docs just want to put me on anti depressants telling me my symptoms are due to me working myself up.... I know there's something very wrong with me and no one is listening!!!! It's awful!!! I have had ct scan but it wasn't the proper ct for pancreas, iv read u need a 3 phase ct for pancreas or it can be missed.... They just did a general abdominal ct. now my liver functions abnormal , and because of pain on right side and shoulder pain my new doc says my liver is enlarged.... Well now I'm convinced even more now..anyone els had a tumor that was missed with scans???

0 likes, 25 replies

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  • harry_58794
    harry_58794 Babalishous

    Posted

    A certainly complicated presentation if this be Pancreatitis.

    One presumes that the Doctor in charge has developed a so-called Differential Diagnosis. And if so, what might the two other possibilities be, if CP is being ruled out--or is CP still a Provisional Diagnosis, but with criteria missing, and that are still being pursued?! Thanks.

    Harry.

    • Babalishous
      Babalishous harry_58794

      Posted

      Hi, no co has been ruled out but I never thought I was that anyway, I do believe its a tumor. As I get like nerve pain mid back feels like something's pressing on my spine. And I don't have a back back or trapped nerve as my doc can press my back all over and can't set it off... It's just spontaneous.

      I have every symptom of it but cans not showing anything.... But I do know it can be missed by scans. Now the docs are not doing anything ANC my symptoms are getting much worse! :-(

  • genna07944
    genna07944 Babalishous

    Posted

    I'm so sorry you are going through all of this.  I know the pain is intense.  The first 2 days of my hospital stay, I was begging the nurses to either kill me or give me versed!  (Versed is used to knock you out for small surgeries, painful tests, etc).  I'm in USA and don't understand why y'all's CP or AP isn't diagnosed quicker.  I went to emergency room with SEVERE abdominal pain.  It was mainly at the bottom of my ribcage and down the left side.  I had a CT, X-Ray, ultrasound and bloodwork.  I was diagnosed within 2 hours.  (It took that long to get in for the tests).  My bloodwork showed my lipase level was 4409 (393+ is high).  Also my C-Reactive Protein was 257.  (3 is high).  lipase is a pancreatic enzyme and C-Reactive Protein is a measure for inflammation. The CT showed a pseudocyst in the tail of the pancreas and the ultrasound showed inflammation.  I had an MRI, but it was done the day after my diagnosis.  It was used to get a clearer picture of the pancreatic area.   
    • Babalishous
      Babalishous genna07944

      Posted

      I yes pc has been ruled out for me..... I'm convinced it's a tumor.... I have all the symptoms and now getting pain when I breath in, like nerve pain in my spine every time if breath in like so things pressing on my nerves... I have nausea, blood when I'm sick (not a lot just streaks) pain in my throat, chest pain, it's always getting worse.... I know something seriously wrong and no one will listen.... I have 2 boys 11 and 6 and I'm terrified for them. Doctors just wanna put me on anti depressants because when I go in I cry. It's not like I'm a hypochondriac Iv told the docs to look through my medical record.... The only time iv been in to docs in my adult life was for my pregnancies. But they still think I'm making a fuss about nothing.
    • Babalishous
      Babalishous

      Posted

      Sorry I meant cp has been ruled out I'm convinced it's a tumor
  • harry_58794
    harry_58794 Babalishous

    Posted

    Harry here--again.

    It is hard to fathom why nothing of an objective nature has been found to date, given the florid symptomatology of which you continue to complain. Sometimes expensive as they may be, there are imaging studies--perhaps involving contrast medium for greater clarity--that ought to rule out or in any remote appearance of a tumour. A tumour at the head of the pancreas can be easily missed,  but were your pain intensity and its referral pattern as classical as it sounds--and all due to a tumorous development(that WOULD be associated with at least one or more physical signs of this dreaded complication)--why, the literature that I've read on this matter, makes delineation of whatever is going on in the pancreas to be readily  discernible- --just my opinion though.  And I don't get any impression that an invasive study of whatever kind needs be undertaken.

    If you're not already in such a place, might referral to a Tertiary Care Centre(you know, with a Medical School and Tertiary Care Hospital etc), for those advanced type diagnostic studies that are generally located in those environs--be the answer to the question that remains?!  Just a thought, but one about which I suspect  your Attending Dr may have one of his own.

    Meanwhile "keep on the attack" as they say in some places. And the best of luck with your pain management.

    Harry.

    • genna07944
      genna07944 harry_58794

      Posted

      I agree.  I don't understand the number of people spending weeks or months trying to find a diagnosis.  I was diagnosed within an hour of getting to the emergency room.  The diagnosis was backed up by blood work (including lipase levels and a metabolic panel).  I then had a CT and an MRI to look for gall stones (none found).  I thought my diagnosis was simple.  Great doctors at my hospital!!
  • norbert01
    norbert01 Babalishous

    Posted

    Babalishous, I am sorry to hear of your ordeal. If your live is enlarged does not necessarily mean you have a tumor unless your physician has confirmed to you. The symptoms you have could very well be pancreatitis. I also have pain like you have described, but stlll nothing was detected in the CT Scan. I did it with contrast. Before the scan was was given a dye that was put in 1 litre of water for me to drink and when the scanning was in progress they injected me with another kind of dye in my vein to further enhance the picture, but still everything were normal. However, from the untra sound they told me I have Chronic pancreatitis.  Have you done a blood test to check your amylase and lipase levels? If yes can you please tell me what the figure in u/l?
  • Babalishous
    Babalishous

    Posted

    Hi guys thanks for taking the time to reply to me, means a lot that your listening.... My Amalise and lipase levels are normal I wasn't told measurements on them just that doc said they are all normal. Cronic pancreatitis has been ruled out with a stool sample. I feel it's a tumor because it started off with pain in my throat not where my tonsils are but lower down at base of my neck .... This was 10 months ago I still have this now.... The longer it goes on the more symptoms I am getting and the more pain I'm in, I just think if my symptoms are getting worse it must be something progressive. The blood must come from somewhere for some reason. 

    The reason I'm searching for a diagnosis is because I know my body and I know something is very wrong!!! I have children I owe it to them to look after myself. 

    Going back 10 months before my symptoms I had a blood clot in my leg (known to present in pancreatic cancer) at the time I was doing a sports weekend so wasn't in the usual situation to get a blood clot in my leg. I'm not on the pill so that couldn't have caused it. I don't drink or smoke. 

    i also have a swallen  lymph node in my neck, it's been checked and its not got cancer in it but it is swollen and has been for 10 months now, another sign! 

    I hope I'm wrong but I really don't think I am. 

    I have done a lot of eraser have on this and read that mri & ct can miss some tumors. I don't know what to do next, I feel like a ticking time bomb! X 

    • Babalishous
      Babalishous

      Posted

      just an update pain getting worse.... pain under ribs on left side like cripping cramp pain.... chest pain and shoulder blade pain upper back ache, & throat pain... its been 11 months now, this started off with thriat pain which i still have, and nerve pain in mid spine...

      doc went over my scans again and said my pancreas looks more plump than normal... athough he thinks it could just be a healthy plump it can also indicate a Abnormality, why would he think healthy plump when im so symptomatic???

      so cos hes ruled out cronic pancreastitis hes testing me for autoammune pancreatiyis... although incredibly rare!

      if its not that, im having another mri as he wont give me another ct.... but it didnt show the 1st time why would it now??

    • Ruthie49
      Ruthie49 Babalishous

      Posted

      Hi, I was just reading your thread as I've had pancreas symptoms every day for ten months though all scans have been clear. Just wondered where you were with this now and how you are getting on.

    • Babalishous
      Babalishous Ruthie49

      Posted

      Hi, what symptoms do u have?

      I have learnt though lots of reaserch in hat chronic pancreatitis can be very difficult to diagnose if it's not bad enough to cause significant damage to the pancreas.... I have spoke to a guy from usa who had symptoms for a year who also had clear scans and bloods but was picked up during a ercp scan, even his eus scan was clear.

      I'm ok Iv took control and eat clean stay away from trans fats I eat organic and gluten free where possible, and drink loads of water ( which I swear by, has really helped)

      I still get all the pains but not a frequent and not as intense, but if I eat badly or drink achahol my pains intensify. Do I'm trying to control myself instead of taking painkillers that don't work anyway.

      How bad is your pain? And whats your symptoms?

    • Ruthie49
      Ruthie49 Babalishous

      Posted

      Pleased to hear you are managing your symptoms. Do you still get pain every day.

      Mine was at its worst last Oct. At first doc thought it was food poisoning or a virus but I knew it was different and felt like something was inflamed. At that time zI had pain in centre and left side under rib but also severe heartburn, nausea, spasms shaking all over and adrenalin type surges that seemed to start under my ribs and spread through my body. I also had loss of appetite, painful digestion and diarrhoea. All this triggered anxiety and depression so then it was really hard for the docs to know what was causing what but all along there has been a physical issue there and it's right in the pancreas region.

      To cut a long story short I gradually improved - I'm a coeliac and gluten free already but found I couldn't tolerate dairy so cut this out, low fat and zero alcohol (I was not a heavy drinker but used to have wine with meals two or three days a week). Ten months on I have my appetite back, regained most of the weight I lost, but I still have mild to moderate pain every single day, normally as the day goes on. Eating makes it worse and so does being on my feet. I still have to lie down a lot and get very fatigued. Every morning I wake with tightness and pressure under my ribs and tingling down both arms and really panicky with it. I still get a lot of heartburn.

      All my tests have been clear so far except for a slightly low faecal elastase which, along with the daily pain, points to the pancreas. The following tests have been clear so far: Amylase, liver & kidney profile, CA19 tumour marker test, standard ultrasound, CT with contrast, EUS, MRPC with secret in, gastroscopy, colonoscopy and capsule endoscopy, cholesterol, calcium & triglicerides, autoimmune antibodies and many other blood tests.

      My gastroenterologist doesn't know what else to do and can't make a diagnosis. I requested a referral to a pancreatic specialist but will not see her until November.

      I'm going on holiday soon for three weeks and it's hard, not only dealing with pain and symptoms but the anxiety of not knowing what it is or if it will ever go away.

      I hope you are having a good day.

    • mark91131
      mark91131 Babalishous

      Posted

      Hi , Im having similar concerns about myself - how are you now?
    • corrie56290
      corrie56290 Ruthie49

      Posted

      I have been going through the same things since 2009. It is so very frustrating and I live I fear that I have pancreatic cancer. My gastroenterologist says I would be dead if I had that for 8?years.
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