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  • May 5, 2017 at 12:51 pm

    jk, thank you for your post. I am so discouraged, I have tried for a year to keep working so I could have the insurance to get help, seemingly to no avail. It sure does sound like CIDP however. I wish I understood why he believes it is NOT CIDP; is it possible to have no clear symptoms (reduced reflexes, neg. blood work, etc) and still have CIDP?
    I appreciated your feedback!

    May 5, 2017 at 12:42 pm

    GH, thank you for your reply. As to why not CIDP, I assume it was because my blood work was negative. I don’t really know enough about diagnosing CIDP although I have read quite a bit about it.
    My concern is that he missed it, and I have no follow up with him unless I “become worse or have another incident”. I am already worse than I was at the beginning however.
    I have a Cleveland Clinic resident who is still working with me however I don’t believe she has the experience of the Mayo doctor. I just don’t know what to do at this point.