Recovery

Recovery time cannot be predicted. Generally, it takes from one to three years to reach maximum recovery, which may be less that 100%. We all just try to get the best recovery we can. Good luck with it.

It is frustrating, no question about that. My case was classified as CIDP, not GBS, but resembles GBS more than the slowly progressing or relapsing forms of CIDP. I am a year and a half out of the hospital, and walking fairly well without assistive devices, but cannot run and may never, it seems, due to wobbly knees. Some people make a complete recovery, however. It depends on the nature and extent of nerve damage. All you can do is to work at rebuilding strength and balance and hope for the best.

Are you getting professional physical therapy?

Physical therapy is very important if you do not yet have the strength to be active regularly. Activity, without overexertion, is important to recovery. If you doing it entirely alone, the concern is that you may not be doing enough to optimize your recovery. When I started outpatient therapy, I barely had the strength to get to the therapist and back home. I spent most of time between sessions resting up for the next one. But I did it twice a week for months until I felt I no longer needed it for improvement.

CIDP is distinguished from GBS in the profile of the progression of the didease. GBS reaches maximum progression in eight weeks or less, typically about four weeks. CIDP progresses more slowly, although a rapidly progressing case like mine will appear to be GBS at first.

If you can manage it, professional physical therapy from a therapist familiar with GBS is highly recommended. Just one or two sessions a week will help you recover.

GH,
I tried to find some research on CIDP with rapid progression but haven’t had much luck. Could you please explain what happened to you? My recovery appears to have regressed some ad looking for answers. Unfortuately we can not search the forum like we use to. Thanks, Mark

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.

Thank you GH