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  • #3946

    Howard
    Member

    My nuerologist has daignosed me with CIDP. He also suggested he could give me a referral to Mayo Clinic for second opinion. Is there anyone out there who could share their experiences at Mayo? How were the doctors/staff? Were they exahaustive in their evaluations? How long did you have to spend there for your evaluation? Any feedback would be greatly appreciated.

    Thanks

    #27384

    cidp kid
    Member

    Howard,
    We took our daughter to Mayo when the neurologists in Chicago couldn’t figure out what she had. Three separate neurologists suggested Mayo Clinic in Minn. My Daughter was 3 years old when we wentup to Mayo 7 years ago. They ruled out genetic issues, did all the test that no one in Chicago thought of. In Chicago they only did an MRI and EMG, then said we can’t figure it out. I swear every pediatricte neurologist in Chicago wanted to pick my brain then said to try another doctor.

    My husband sleep walks and is treated but a neurologists who did his residence at Mayo with Dr. Peter Dyck (Google his name ) . Dr. Dyck is in the adult neurology dept. and was involved early with GBS, EMg, Nerve biospsies. His staff helped in diagnosing my daughter. She has CIDP, not a bad case compared to others, but still has it.

    Mayo is like no where else we have been. We have taken my daughter to St. Louis and Atlanta to see CIDP specialist. No place comes close3 to Mayo in our experiences. All the doctors appointments are 1 hour long. They would actually pick up the phone while we were in the room and call another doctor there to confere on their findings. They got back to me promptly and they always sent me doctor reports within a week of being there.

    They were great on diagnose but they wanted to repeat the EMG every 2 months on my daughter while she was on IVIG and We just couldn’t put her thru that.

    Send me a private email if you want me to call and talk with you.

    Good Luck,
    Cindy

    #27777

    pastmaster
    Member

    Howard,

    I went to Mayo, in 1997, after my Dr’s in Ann Arbor, were at dead-ends. Glad I went, they diagnosed me with CIDP, correctly and saved my life.
    Dr. John H. Noseworthy, Chair of Neuro. and Peter J. Dyck, who named the CIDP Syndrome, were but 2 of my Doctors. GO TO MAYO CLINIC!

    Email Mayo before you go as they will send you an info packet, and go to their site on the internet, that will answer just about all your questions about going and staying there. Very Thorough! Google Mayo Clinic and you will be at their site. Things are as Cindy, described to you. I wondered why I didn’t go earlier and saved myself so much suffering and time.

    Good Luck, Paul.

    #28172

    billwhit1
    Member

    Hi,
    Yes I went to MAYO in Rochester and saw Dr Dyck in 84. They are very through and recomended Plasma Pherisis (No IVIG at that time) GO if you can
    Bill W

    #28430

    mnsummer
    Member

    Hi Howard,

    I went to the Mayo Clinic in July for a 2nd opinion. I was very impressed with the professionalism, testing, and especially the quick diagnosis. I went to doctors for 2-3 years before getting a real diagnosis, but when I went to Mayo in Rochester, MN — I had my diagnosis in just over a week. Unfortunately they did confirm CIDP. They agreed with my current treatment of IGIV. Good luck. I hope all works out for you and they can help.

    MNSUMMER

    [QUOTE=Howard]My nuerologist has daignosed me with CIDP. He also suggested he could give me a referral to Mayo Clinic for second opinion. Is there anyone out there who could share their experiences at Mayo? How were the doctors/staff? Were they exahaustive in their evaluations? How long did you have to spend there for your evaluation? Any feedback would be greatly appreciated.

    Thanks[/QUOTE]

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