PeteM

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  • July 9, 2019 at 8:09 pm

    I’m in St Catharines, Ontario. It’s in the Niagara peninsula. Our population is 450,000, so we should have 16 folks with CIPD.
    Unfortunately in Canada we have privacy laws, I have no idea who the other 15 are, and no way to find out.
    This is a very lonely thing to go through! The docs and nurses are restricted by the privacy rules as well.
    We have a GBS/CIDP foundation East of Toronto who hold seminars from time to time, I attended one but didn’t learn much or meet any from Niagara.
    Hopefully, when I see the new doc he’ll put me on SCIG

    July 9, 2019 at 12:41 pm

    My neuro was very careful with his diagnosis, four MRIs, a CT scan, final proof was a spinal tap!
    He put me on a quart of gamma every three weeks (this took about 4 1/2 hours each time, not much improvement first six months, during second I wound up walking… no cane, now I use cane in big stores…Costco etc.
    Seems that no two people react the same, perhaps first test could be spinal tap, not MRIs

    Pete M

    July 9, 2019 at 12:26 pm

    I should have mentioned that I was on IVIG every three weeks for a year before being cut off all treatment, I was hoping I could ease off to six weeks between treatments of gamma. No mention of prednisone, thankful for that.

    February 15, 2019 at 7:46 pm

    Tim, I had 4 MRI’s, a CT scan….fell about 80 times while waiting for diagnosis, smashed up the car …no feeling in feet, hit brake and gas at same time!

    Doc finally did spinal tap that confirmed CIDP, started IVIG gamma globulin, Now I can stand, (help with dishes) walk/shuffle short distances (20 feet) Big problem here is total lack of peer support! It’s a very lonely journey.

    March 19, 2018 at 8:52 pm

    It appears that IVIG is the preferred treatment, seems to me that I read that stem cell treatment is being considered.Any comments on this?
    I start my IVIG 11 April and am looking forward to it, fell last night in the bathroom, it took my wife and I 15 painful minutes to drag me to a place where could stand up and shuffle back to bed…….PeteM

    March 16, 2018 at 7:26 pm

    Hi, I’ve had symptoms for 1 1/2 years….soles of my feet mostly, GP had no idea, went to physio for months with no change, back to doc and finally to neurology doc. At this point I was experiencing numbness starting to advance sole of feet became swollen toes don’t touch floor, balance unsteady. Hands are numb… Not good for a woodcarver! At least I can still hold my harmonicas. Numbness progressed, now knees to feet all numb.
    One surprise was the numbness that started at the lower part of the rib cage, ar present I have a circle around my upper chest (a girdle that restricts chest expansion) I fall occasionally, walker and all. Difficult to stand up from prone position even with help as knees are so weak.
    After four MRIs, two CTcans, spinal tap, angiogram (I’m 83 so I guess they’re concerned about my survival of the treatment)
    I see a vascular surgeon April 3 to see about a narrowed artery in my neck that could cause complications during the IVIG. If all goes well I start treatment 11 April just in case, though, I plan on making my house more wheelchair friendly….