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Thread: Abdominal mass

  1. #11
    Super Moderator Top User po18guy's Avatar
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    Go to a university or research hospital. Demand it.

  2. #12
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    I am working on it but having a hard time. Location is difficult, plus I need to find a new primary doctor before I can request to be seen by a university or research hospital. I just found out that my primary doctor has been interfering with my care. Went to ER twice today with severe abdominal pain. I was sent home with no workup both times. I found out the second time that the ER doctor contacted my primary who gave specific instructions to run no tests. Apparently I am being punished for having an acute health issue (I think it might be my gallbladder, bowel or appendix) while being chronically ill with something they cannot figure out.

  3. #13
    Super Moderator Top User
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    Next time you go to an ER, go to a university or research hospital as po18guy says. I did this with my sister; I drove 100 miles in a snowstorm to get there but when we finally got there we got answers.

    And if you think your primary care doctor is sabotagin you, then don't give his name when they ask. Just say you don't have one. They won't question that, and if you don't intend to go back to him (which it sounds like you shouldn't) then it will be the truth.

  4. #14
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    Thank you for responses. feeling abandoned and dismissed by doctors. I live on an island so no way to get to another hospital aside flight. What are good university or research hospitals in California or the west coast? talking to family out of state to see if I can go to mainland as soon as possible. I did not mention my primary with second ER visit and they pulled up electronic records and contacted her anyway, that's how I found out when ER doctor came in and said "your primary told us no more tests for you," etc...

  5. #15
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    I'm surprised the doctor would even have that kind of power, that's just weird.

    Top teaching hospitals in California include UCSF, UCLA, Stanford, Cedars-Sinai, UCSD... Any of those within reach?

    If there's another doctor on your island, see if you can get your primary care switch to him/her.

  6. #16
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    Thank you. The situation feels abusive, and I have little recourse. I am terrified of going to any ER again no matter how ill I am now. If I complain or try to advocate for myself, things will get worse. Just have to find a new primary but it might be difficult since there is a doctor shortage here and many primaries won't accept "complex" patients. Working with family to contact a couple of those teaching hospitals - thank you!

  7. #17
    Moderator Top User
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    Hi, you have had some really good advice and whilst I cannot add to it, just wanted to say I do hope you manage to resolve this appalling situation, but if you are in a situation where you do need to go to hospital, make sure you do and if appropriate keep a record of your experiences, including the last one so that if you ever need to you have the evidence at hand to use to show how this doctor has had a negative impact on your health.

    hope things improve
    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  8. #18
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    Leaving within the week. If things workout and I find out what's going on will update. Thank you everyone who responded.

  9. #19
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    well done on taking this step and I hope you get the answers you need

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  10. #20
    Regular User
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    Jan 2018
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    Hi all,

    In California undergoing workup. Was hospitalized for 5 days with severe dehydration, abdominal and chest pain. Discharged now and awaiting follow ups with specialists. Several tests and biopsies still pending. I am no longer able to walk or eat solid foods. I still have no idea what is wrong with me, but hope they can figure it out soon.

    Day before I left my primary in my home state discharged me as a patient. Things are also complicated here because of electronic records from my home state and apparently GI in my home state mixed up someone else’s records along with mine which resulted in someone else’s symptoms, diagnoses, and allergies in my chart. I was able to amend the wrong diagnosis and allergies, but they won’t change their chart notes/assessments which include symptoms I never had — this is probably how I ended up with the IBS diagnosis.

    Still no diagnosis but this is what they know so far:

    • Walking/eating causes extremely high BP and pulse, chest and abdominal pain.
    • Periodically my BP drops really low e.g. 80/50
    • 15 lb weight loss in last 6 weeks
    • I may have had C. difficile complicating things - was put on Vancomycin by an ID before I left to California with significant improvement of low GI symptoms, but unfortunately no doctor in my home state bothered to test my stool
    • low blood albumin, protein, calcium, and potassium
    • WBCs, blood and leukocyte esterase, renal epithelial cells in urine, no UTI
    • mild tricuspid regurgitation with elevated troponin when I was hospitalized (ECG was normal 3 weeks ago)
    • documented dry flushing associated with exacerbation of symptoms and pain and severe “allergy” like symptoms
    • Gallbladder and upper endoscopy normal
    • several shallow colon ulcers
    • small pancreatic cyst, possibly IPMN or mucinous cyst that was not detected on previous scan
    • ovarian lesion is now being called a teratoma continuing to grow at about .3+ cm/month

 

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