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2nd Opinion at Stanford?

Posted , 11 users are following.

DebbieHurts
DebbieHurts

Stanford, if you don't know, is a University in CA with a hospital.  I am in Nevada next door.  My rheumatologist, who could not figure out what was wrong with me, has suggested I go for a second opinion to Stanford.  Oh, my goodness.  Travel is impossible for me to do, so they would have to drive or fly me there.  I take care of my 94 year old mom and would have to get someone else to do that.  What do you suppose they will do to me at Stanford?  Polymyalgia-wise or otherwise.  Would you go?

0 likes, 14 replies

14 Replies

  • Twopies
    Twopies DebbieHurts

    Posted

    You didn’t say why your rheumy wants you to go...I appreciate your need for privacy, but don’t think I can add my two cents into yay or nay without knowing whether the trip is worth it.  Sounds like a real hardship for you (for most of us) unless it is critical that you go. Sorry I’m not more help...
  • Miki680
    Miki680 DebbieHurts

    Posted

    Are you on Prednisone yet and have you had blood tests?  Maybe you need a local GP or different Rheumy who can diagnose you. I do believe in second opinions and with Stanford (i am in CAlifornia) but if you are in incredible pain it will be hard to travel. Prednisone is a miracle drug for relieving PMR pain, if that’s what you have. Good luck, go slow, and take care, Amy
  • karenjaninaz
    karenjaninaz DebbieHurts

    Posted

    I do not think you need to go so far for a diagnosis. Some ideas: another rheumatologist opinion in the same state or even an MD gerontologist who specializes in the “elderly”.  
  • EileenH
    EileenH DebbieHurts

    Posted

    Not a problem I will ever encounter. Doesn't say much for your rheumatologist does it really? But if he isn't being able to manage your symptoms and find an answer - maybe you will have to find a way. Does Nevada not have any options?

  • DebbieHurts
    DebbieHurts

    Posted

    Guess I should have repeated my history.  I'm the one who got PMR about 6 years ago and have gone up and down on Pred due to flares and illnesses.  Right now taking 24 and having awful time going lower.  Meanwhile my rheumatologist has had me do many tests to see what else I might be having that cause the great pains I have, as she can't believe it is PMR anymore.  But most tests are normal except SED rate is high and I have prediabetes.  In Nevada in Reno we are closer to Stanford than Las Vegas or any other bigger city.  They are other dr in Reno.  I'll ask her about that.  Thanks for your comments.

  • jeannecatlover
    jeannecatlover DebbieHurts

    Posted

    Why not try to set up a remote appointment with a doctor at Stanford via Skype?  I have never found the physical part of the exam helpful or relevant--they will look at your bloodwork and you will talk, and that can all be done remotely.
  • DebbieHurts
    DebbieHurts

    Posted

    Thanks for all your ideas.  That will help me have questions for my dr tomorrow.
  • DebbieHurts
    DebbieHurts

    Posted

    I saw the rhuematologist yesterday and though I like her personally, I was hurt by her lack of understanding.  She said I would have to travel myself to Stanford if I went, and I said, I won't be able to go then.  She asked why, and I said, if you don't know I don't need to tell you - in a quiet way, thinking she would realize I couldn't drive or ride that far on my own due to pain.  She replied, Try to tell me.  I got teary and sad.  She also said they have a rule called Non compliance, that means if I don't reduce the pred, she will have to stop seeing me.  So I have to reduce again and mean it!  She gave me orders for a sleep test (for apnea),and some more blood tests.

    • Twopies
      Twopies DebbieHurts

      Posted

      Oh no! If my docs kicked me out for noncompliance, I’d be in the same boat as you.  With so many people relying on the internet now for answers, that’s a surprising position for her/her clinic to take.

      Stupid question:  are you stuck with her? (Although I’m sure you’ve already explored that avenue).  Some of us (like me) are lucky enough to find gps willing and able to serve us.  I’m here cheering for you to find an alternative solution.  Is she receptive to reading articles about the latest methods for treating pmr?

    • EileenH
      EileenH DebbieHurts

      Posted

      So you MUST reduce even if symptoms return - but when you take the dose you need you will be chucked out? What an appalling ethic - not to mention "It's up to you to get to a second opinion - and I don't care if you can't travel because of the illness..."

      And people claim this is the best healthcare in the world...

    • karenjaninaz
      karenjaninaz DebbieHurts

      Posted

      Debbie,

      there are links to publications on this site which are accepted as the standard of spare for PMR and gca. Some members have helped to educate their physicians  with the publications. 

      On the other hand your physician might be unteachable. You would think she could consult with another rheumatologist or go online. Is she board certified in rheumatology?

      I fired my gp for misdiagnosis of me as fibromyalgia despite abnormal labs. I self referred to a rheumatologist . I have the advantage of extensive medical training.

  • DebbieHurts
    DebbieHurts

    Posted

    Eileen, I mentioned this forum to the dr - be funny if she read your scolding.  I'm tempted to print it out and show it to her.  No, she doesn't seem to like my suggesting internet stuff, as she never mentions it in our meetings.  I am am able to emai her and she replies very promptly.  She also calls and seems very involved.  

    I have a plan.  I told her that I went up to 24mg this past week and feel better and maybe I should get a SED rate test to see if I improved bloodwise.  She agreed, but said she didn't think it would show improvement since she thinks the inflammation is from something else.  So if the SED is improved I will be right and if not, she will be right.  Let us see!

    • EileenH
      EileenH DebbieHurts

      Posted

      Like what? If pred helps the symptoms then how can she know which it is? Obviously it too responds to pred. Lots of things do...
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