Reply To: New CIDP member

March 19, 2017 at 8:40 pm

Welcome Doug, What tests confirmed the presence of CIDP? The disease if often preceded by GBS, did you have GBS? For how long have you been experiencing the symptoms?

Last month I attended a GBS/CIDP conference where it was stated that recently quite a few new cases of CIDP have been incorrectly diagnosed and there is concern about this trend within the professional Neurology community. The incorrect diagnoses of CIDP have put insurance companies on alert and they are tightening their criteria for approval of expense treatments like IVIg.

Are you in an area where there is a Center of Excellence within driving distance? It might be to your advantage to get a second opinion about what you have.

If it indeed is CIDP, symptoms vary so widely between patients it would be hard to generalize on your specific recovery without more information. If you and your doctor feel you could be in a recovery period, it might make sense to start PT. They will test your strength and continue to measure it while you are getting treatment. If you are becoming stronger, the PT records will likely confirm it, and you will know.