By the time I was diagnosed about 3 months had elapsed since my symptoms started and by then my legs were jello – I was not able to stand from a sitting position. I was speaking at a conference in DC and the elevator at the hotel was not working and were on a high floor. I panic’d on the stairs not able to go up or down. I reschedule my flight and went home barely able to walk to the plane.
I had my spinal tab and first emg in the end of August 2000 and start IVIG a week lately – daily for about 10-14 days.
I have been on constant IVIG since. I was retested several times at the Mayo clinic with diagnosis and test staying the same until last year when for some odd reason the CIDP hit my arms and hands with a vengeance leading to an August retest of my arms and hands which showed severe damage.
Mayo noted my case as atypical since my arms and legs have been impacted at different levels at different times. I have ivig every two weeks.
They took me off Lyrica after many years due to edema.
I know I was fortunate to get a quick diagnosis and have heard so many stories of folks that wait forever!