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Pancreas pain docs not listening!!!!

Posted , 17 users are following.

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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  • JoBlack1
    JoBlack1 Babalishous

    Posted

    MRI/Cat scans don't catch the pancreas issues. I had to go to IU Health Center to find one of the nation's specialists (Dr. Max Schmidt) who did an in depth CAT scan (some scans are weaker than others) and then tons of blood tests along with an inpatient EUS.  This is when they discovered I had half of my pancreas calcified so had to cut that out (the pancreas tail) - and that most of my pancreas was/is covered with pseudocysts.  That was last May 2014.  In my most recent check up (EUS) it was discovered that I have a 10 cm cyst in the head of my pancreas that they did a needle withdrawal of the cyst with a celiac block for pain.  The nerve block didn't help much so I remain on Norco for pain and Zofran for nausea.  I'm also on ZenPen 2500 for enzymes.  The hardest thing to manage is my diabetes since I'm so sensitivie to food - I eat what I can...when I can. Which is unpredictable when you don't have an appetitie.  

    I would recommend you find a pancreatic specialist and get the full blown EUS and complete blood tests related to amylise and lipase numbers.

    Good luck and keep us informed.

     

  • salemdp
    salemdp Babalishous

    Posted

    Babalishous, how are you now? Please give an update. I've been dealing with very similar problems. Only I actually have a lump and my rib cage protruding, gradually getting larger, but because they couldn't see anything on their poorly done CT scans they only want to give me psyche meds. I'm so done with doctors.

    They missed a tumor in my ovary years ago. Thankfully it was benign, but it caused me severe pain periodically for years before it was successfully found. In the meantime, the doctors had me convinced I was a depressed crazy lunatic hypochondriac. They missed Lyme disease and serious B12 deficiency. I'm beginning to think the medical system is more ill than I could ever be.

    I continue to get worse- with short periods of mild reprieve- thinking "oh, it can't really get worse without me dying", and then somehow it does. But I haven't seen a doctor in months. I'd rather suffer quietly at home in insane isolation than go be emotionally and psychologically abused by those lunatics.

    I'm incredibly intuitive and I've lived through enough that no one can make me doubt anymore when the intuition is this strong. Something is very wrong with my body and that something isn't psychologically rooted. It's very physiological. Their tests aren't perfect and neither is their ability to perform or read them.

    Anyway, just wondering if you ever got a diagnosis. I hope you're still alive for your kids.

    • lornacsr
      lornacsr salemdp

      Posted

      I hope you are still following this blog and hope you are doing better.   I don't see a response to your last inquiry from Babalishous.   Hope she is doing okay.    I have been having mid left-sided back pain for five months.   I woke up with it in the middle of the night while on vacation.   It feels like an aching knot...just a little bit below bra strap level.   Three weeks after I had the pain, I had a CT scan of my pancreas.   They said pancreas, liver and gallbladder all looked fine.   This has now been going on for five months.   I had another CT today, now checking pancreas again as well as kidneys.   They did find cysts on my kidneys previously, but I have had those for a long time, and I think the pain is higher up in my back than kidney area.   Have you ever gotten any answers for your problems?   My primary care doctor told me last time I saw him, "I don't know where to go from here."   So I went out of town to a new doctor who is ordering all these tests.

    • Teckit
      Teckit lornacsr

      Posted

      Hi lornacsr, I have the same pain as you for over a year now, do you still have those pain, have you found our what cause it??? Hope you are doing ok now!!

      Thanks

    • lornacsr
      lornacsr Teckit

      Edited

      I had every test u can imagine for my pancreas and they told me everything was fine. I took myself to the Mayo clinic and they ran more tests and the doctor there treated me for functional dyspepsia.He put me on amitriptyline and it has helped tremendously.

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • Teckit
      Teckit lornacsr

      Posted

      same here CT and blood work all clear, just had spinal mri last week also clear, now waiting for endoscopy to look at my stomach. How is your pain feel like?? Mine is like tearing and something shape poke me .

    • lornacsr
      lornacsr Teckit

      Posted

      My pain feels like a knot and an ache in my back, so I spent hundreds on massage therapists but it didn't help. But the amitriptyline has helped tremendously.One thing I have noticed is that my pain will be almost completely gone and if I drink alcohol, it comes back and takes weeks to get it under control again, so no alcohol for me...I have never been a big drinker, so I don't really care. When they started me on the meds, I had to start off with 10 milligrams and work up to 50. Well, one of the side effects is weight gain, so I keep trying to wean myself off of it. I go down to 40 for a few weeks..and I'm okay...then 30...then when I try to go to 20...the pain comes back and takes a long time to get under control. Please keep me posted on how your tests turn out. I tried to put my email here but they deleted it.

    • Sciack
      Sciack lornacsr

      Posted

      hello, how r undoing now? i have very similar pains like you and they subside with alcohol use i noticed. not that im a frequent drinker. can i contact you with private message? thanks

  • britgar28
    britgar28 Babalishous

    Posted

    Hello babalishous,

    Idk if you ever figured out what was going on...but I am praying that your doctor's figures it out and you found relief!! I am going through something similiar. I have been sick since the birth of my youngest son is 2016 and yet to have a diagnosis and still going through all sorts of testing and doctor's to find out. Well I have had to have my gallbladder removed because I got to where it was not functioning and I have been unable to eat solid foods for July of 2017 so for about 7 month's now and I have lost almost 25 lbs in that time period between not being able to keep my food down and not being able to eat. I even get nauseated from the liquid foods some days. And the pain in my side's and in my abdomen is excruciating I have had two CT Scans within a month one to check for kidney stones and they other because I spent the whole day last Thursday in the hospital due to severe abdominal pain that almost made me crash my car when I was driving to get my son from school and was having rectal bleeding... I am just so tired of being nauseated and not able to eat and most of all always being in so much pain....!!!Have you gotten any answers??? I would love to hear what you have found out if so??

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