Onset of symptoms…

August 30, 2007 at 9:59 am

From your post I cannot tell if it is CIDP or not. My symptoms began on March 17th 2002 with severe upper back pain at night, then my upper back went numb. On March 27th I woke up with numbness in my hands & feet. My legs started to get weaker after that & I would often fall down stairs without knowing why. Then by April 27th I woke up unable to walk, had lost the use of my hands & my entire body was numb. But I was an extremely case, with a rather rapid onset. I was originally dx with GBS, but by the middle of May it was changed to CIDP.

CIDP usually presents symmetrically, what happens on one side is also happening on the other. Normally begins with some kind of peripheral neuropathy starting with numbness & weakness of the hands & feet, progressing up the arms, to the elbows, then to the shoulders, etc. Same with the feet, it then moves up the legs… Most often it includes both sensory loss as well as motor function or weakness of the limbs. But it can also be just one or the other, many do not lose feeling, just strength.

CIDP is best treated with IVIG, but steroids also work oftentimes. The only thing that you said that made me think it might not be CIDP is that steroids made you worse. Many neuros are now trying prednisone or solumedrol (IV infusion of steroids), as the first choice of treatment. That is probably due to the high cost of IVIG. CIDP usually does not get better without treatment, there is the relapsing/remitting form which will respond quite well to treatment, then there is the progressive form, which usually just continues to get worse, slowly, but most do not get much back after they have lost it.