Reply To: Recovery

Mark, it’s not a formally defined category. I am considered atypical in that the progression of weakness was faster than is typical for CIDP, which can develop over years, but not fast enough for GBS. GBS must reach maximum progression in eight weeks or less, typically about a month. I was initially diagnosed (tentatively) as GBS. I went from onset of symptoms to loss of the use of my legs in about four weeks. Over the next four weeks or so I continued to deteriorate, my torso and arms and hands weakening as well, despite two rounds of IvIg. I was in rehab, but continuing to weaken, then I contracted pneumonia and was back in the acute hospital promptly. I crashed, unable to move anything below my neck. Somewhere in there, I am not sure when, my diagnosis was changed to CIDP and my treatment was changed to plasma exchange. The change in diagnosis was in part because of the timing and in part because I had no respiratory impairment, which is typical for severe cases of GBS. Prednisone was added to my treatment, which is not given for GBS. It was another three weeks or so before I had the first signs of recovery.

I am still considered CIDP, but a year and a half out of the hospital I have had no signs of relapse. I don’t care what they call it — I’m just happy to be getting stronger, even though there are residuals.