Searching for CIDP doctor in Pittsburgh PA

This topic contains 2 replies, has 2 voices, and was last updated by  MooseOnTheLoose 1 month ago.

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  • #116449

    MooseOnTheLoose
    Participant

    I experience CIDP symptoms (pain/numbness/tingling/cramps) since 2009. They were mostly mild located in the feet. Within last year the progress rapidly sped up and my calves are also affected. I still can walk, jog and swim.
    The diagnosis has been established in 2013 and 2017 via EMG and MR thoracic spine.
    I unsuccessfully tried:
    – GAMUNEX-C
    – plasmapheresis
    – Hizentra
    I’m looking for a doctor, preferably accepting UPMC insurance, to come up with next line of treatment. If nobody accepting UPMC insurance, then which Center of Excellence/doctors would be best suited for a character like myself (I was thinking about Hopkins).
    Thank you in advance.

    #116451

    Jim-LA
    Participant

    Perhaps the following Center of Excellence would be a good choice, it’s closer to you than Baltimore:
    https://www.gbs-cidp.org/gbs_cfe/ohio-state-university-wexner-medical-center

    #116452

    MooseOnTheLoose
    Participant

    Jim-LA,

    Thank you for the Ohio State suggestion. I was thinking Hopkins would be no 1 (or very close) in the country from the CIDP expertise, no? Also, aside from the Centers of Excellence, are there any freelancer doctors? If not why is it so? If yes, where can I find them.

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