Claritee

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  • December 14, 2014 at 11:11 am

    Im now scheduled for mayo clinic in mid jan ’15. BP seems to have improved somewhat. Sight also, but both at a glacial pace. This past week I accepted a client, first work…went well but was quite exhausted and sore afterward.

    November 6, 2014 at 8:09 pm

    Thank you again Jim. Your story is most helpful for me, but I wince at the challenges you continue to deal with, but honor the grace in your repoire.

    That information is very timely for me, as I am visiting the neurologist tomorrow am, to discuss this very scenario and plan to bring you testament with me.

    I live in S. Dakota, Rapid City…nearest Center of Excellence is apparently the Mayo Clinic in Minnesota…Insurance does not go across state lines. So, hopefully the local neurologist will be capable.

    Yes, I had the spinal tap with high protein and also some reflex tests. I have not had the nerve conduction velocity test. Another reason your post may prove helpful. I’ll keep things informed here.

    Thanks again!
    Bruce

    November 6, 2014 at 3:23 pm

    Thanks Jim. I appreciate your response and am sorry to learn of your ongoing challenges.

    Are you saying that you have been diagonosed with three; MFS, GBS and CIDP? I’m curious as to whether all 3 were diagnosed at the same time, or how did the diagnosis progression occur for you? The reason for the inquiry is that I clearly have MFS, but based on a chronic condition in legs I am also wondering if I have CIDP that has yet to be diagnosed…