Onset can be devastingly fast? but…

Anonymous
April 5, 2011 at 7:40 pm

diagnosis is glacially slow!
I thot I was lucky to be diagnosed [after 3 neuros and heaps of tests?] in less than 18 months! Only to be chided by the head of the neruo dept in a training hospital [at a later date]..telling me I ‘COULD NOT HAVE CIDP’, and respond to IVIG, because? I..wasn’t in a wheelchair yet! I responded in kind: Ever think that I am NOT in a wheelchair because I got it in time? YOUR TIME WILL COME! Seek and get all those other opinions that ‘feel right’ to you! But,keep in mind I’d been diagnosed by the head of another area neuro dept head!? Who’d gotten it on target!
And don’t forget to not only ASK, but DEMAND Physical Therapy! IF you find the right therapists? You will be surprisingly blessed!. The good guys know how to motivate you in stages that you can handle and aren’t GUNGHO!…I hate those gungho guys! They do NO good for US! Learn how to learn to re-use your body and use it w/o compensating for everything! It can be done? I’ve done it? At least a couple of times over. Also? As any therapist to give you safe exercises to do at home…there are many. Just do them a few at a time? Many times over when not in PT. They can build you up faster than you realise!
We cannot be hares in this race? Only tortioses! To rush is foolishness.
Slow and steady, and know that the options are not acceptable!
Hope and hugs and get to it, using your common sense as to what’s good and not good and make that progress. I have faith that you not only can? But, WILL!