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View Diary: Don't let this happen to you. (73 comments)

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  •  still waiting results (11+ / 0-)

    from a liver sonogram I had nearly a month ago. I should call and follow up with the PCP, but the tech said she didn't think there was anything to see and part of me wants to see if he ever plans to follow up with me in any way. While I look for a new PCP. My liver enzymes have been intermittently elevated for nearly two years.  Possibly medication related, chronic health condition related etc., but I had to beg him to order a sonogram and he hasn't even followed up with information about whether I should schedule a follow up liver enzyme test to monitor. I even begged him to refer me to a hepatic specialist (with a primary immune deficiency that increases my risk of all sorts of cancers and autoimmune diseases is high and it's always wise to go the extra mile looking into anything that seems off), he said he didn't see any reason to and could follow it himself.  The endocrinologist in the same practice recently ran a genetic test for Osteogenesis Imperfecta and communicated the positive results to me in a letter that I received on Friday evening with no phone call or information about the follow up.  I had to cal lhim and play phone tag for a week to talk to him at all.  When I mentioned the increased risk of heart problems with OI, my MVP, the fact that I have chronic recurrent infections etc.and asked about an updated echocardiogram, he said if I had one echocardiogram that didn't show anything to be concerned about 7 years ago, there was no reason to ever do another.  I know someone else with mild MVP and none of my co-occurring health problems who gets one every year.  The docs these days are all so checked out and overwhelmed, they just don't want to deal. You have to be educated and advocate for yourself and it's a full time job.  

    •  OI (2+ / 0-)

      can be associated with increased calcium deposition in the wrong places--like heart valves.  I'm not an MD but I think you should get a heart scan looking for calcium deposition-this will probably show more than a resting EKG (which BTW shows relatively little).

      Democrats give you the Bill of Rights; Republicans sell you a bill of goods!

      by barbwires on Mon Feb 18, 2013 at 05:05:32 PM PST

      [ Parent ]

    •  It is a full time job (1+ / 0-)
      Recommended by:
      Regina in a Sears Kit House

      Hope you are ok

      It's difficult to be happy knowing so many suffer. We must unite.

      by War on Error on Mon Feb 18, 2013 at 06:05:34 PM PST

      [ Parent ]

    •  Honestly, this isn't really uncommon (0+ / 0-)

      The doctors see a lot of patients, and they know that the test came back negative.  So, they just don't think to call you and tell you.  It's not exactly intentional, I don't think, it's just part of the job.  A lot of these doctors are overworked, and something like 50% of PCP are burned out on their job.  

      You have to really try to get attention.  And if you want it, make another appointment.  Just go in and talk about it.  They can't avoid you that way, and they probably don't mind discussing the results.  

      I've been dealing with a chronic health condition for the past year and a half, and have had numerous tests that all came back perfect.  At first I didn't hear anything and eventually learned that if I didn't hear anything in a few days it meant the test didn't show anything.  Eventually I complained to my doctor about this and then his nurse started calling all the time telling me my test results were normal.  Ironically, I started to feel almost more irritated that his nurse kept calling me with no news, although on balance it was better to be informed.  

      Anyway, the good news is my PCP finally ordered a abdominal CT which amazingly actually showed something.  Of course, it was something totally rare, called mesenteric panniculitis, which my doctor (and probably all of the ones I'll see going forward) had never heard of.  

      But at least after 1.5 years of being treated like a hypochondriac, I finally have something that shows there's something wrong.  Hopefully now I'll have some credibility to help me convince the doctors going forward to actually help me find the rest of the answer!  

      In any case, I totally agree with you, it is a full time job to get the care you need.  You have to be a real pain in the ass.  Don't let yourself get discouraged if you're blown off or treated rudely.  See a new doctor if you have to, but don't give up!  

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