Reply To: Be Encouraged

Talisa, GBS, by definition, reaches the point of maximum weakness in eight weeks or less. Then strength should return, but it may take one to three years to reach maximum recovery. Recovery may not be 100%. During recovery, there may be setbacks, but these are not necessarily relapse, which would suggest CIDP. A true relapse is a renewed attack on the nerves which causes persistant loss of strength. A short-term setback can be caused by over exertion, but this is not a relapse. Only a neurologist can make the diagnosis between GBS and CIDP. Sometimes there is uncertainty. I was originally diagnosed with GBS, but this was changed to CIDP as the disease progressed.

I had two five-day rounds of IvIg, which failed to arrest my progressing weakness. Then I had several treatments of plasma exchange, during which I started recovery. I have been on a recovery path ever since, assisted by medication.

When you say your condition has “lasted so long,” what, exactly, do you mean? When was your point of maximum weakness after onset of symptoms and what has been your pattern since then?