Reply To: IVIG Treatment – To Continue or Not

June 2, 2016 at 9:55 pm

I had sudden onset of polyneuropathy after many years of very mild toe tingling. I met with a neurologist (3rd one!) who said that Guillan Barre – or some form of the condition is the number one condition misdiagnosed as idiopathic PN. He said that the markers for the disease don’t show up in blood serum or in spinal fluid after the acute period. So, if you are not tested in the first 4 to 8 weeks you likely will not have abnormal levels to get a diagnosis of CIPD or CIP or any of the alphabet soup of related neuro diseases.

My only abnormal tests are two EMG’s for the Idio PN diagnosis; I am 7 months into this and my condition is worsening. Walking is very difficult because my legs are weak and painful after only a few blocks. Symptoms are now affecting my abdomen and chest when I lie down. If I am able to get a CIDP diagnosis is it too late for IVIG to stop progression? Thank you for any help. This thread and posts from members has provided me with determination to continue trying to get a diagnosis and treatment.