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Thread: Specialist question

  1. #1
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    Default Specialist question

    My MRI results are not in yet so expecting a call this afternoon on further steps. I've been taking 30 mg prednisone for a few days and the pain in my face is almost totally gone. It hasn't yet done a thing for any other problems but no pain is a huge step.

    My plan is to wait until I have all my reports together so I can have my ducks in a row when I'm seeking an appointment in a vasculitis center.

    Jack, your comments about "local doctors" really hit home because of the poor care I've received in the past for so many other things. But great doctors are going to be local to somebody right?

    I live 15 minutes to Duke University and hospitals. They do not have a vasculitis center, but the vasculitis foundation recommended that I see Dr. Allen at Duke. She doesn't accept new patients unless extreme situation which I am not. Current rhuem (as of last week) works with her in the same clinic. My proposed treatment plan involves a team approach with rheum and eye doc & ENT each specializing in autoimmune disorders, and then reviewing with Dr. Allen.

    Does this sound like a reasonable plan with my local doctors, or is it best to head out of state to a vasculitis center? Seems her credentials of wegs, sjogrens plus the variety of other fun stuff may be a good match for my needs.

    Dr Allen's info -
    http://rheumatology.medicine.duke.ed...etails/0100386

  2. #2
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    I still vote for heading out of state to a vasculitis center. Otherwise I think you risk losing time, taking unnecessary drugs and doing damage (via disease or drugs) while docs who aren't skilled enough try to figure things out. If you got proper diagnosis and a treatment plan from a vasculitis center, maybe they could get you in with Dr Allen and work with him after that.

  3. #3
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    Yep, get to the Vasculits center asap, and follow up with Dr Allen. Ditto to what Sangye said.

  4. #4
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    I waited awhile (diagnosed in April, went to Cleveland Clinic in January) and wish I had gone much, much sooner!

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