Reply To: Negative Spinal Tap-Still CIDP?

June 7, 2016 at 1:36 pm

I’m not sure this is the correct thread for this question so I apologize in advance, but I am really in need of guidance. I just met with a Neurologist from a major teaching hospital in Chicago who looked at two abnormal EMG reports that evidently show axonal damage but no indication of demylination. Therefore, she said that there is no reason for a nerve biopsy or spinal tap and that I most likely have an idiopathic polyneuropathy with no known cause or treatment. IVIG would not help me; only pain medication.

My symptoms are progressing where I am now only able to walk very slowly and only for a few blocks. Pain and weakness and muscle twitching and nerve pain in chest and abdomen, starting in hands and arms. I am in the 7th month since symptoms began.

My follow up visit is scheduled for December. Would it be wise to get an opinion from a neurologist at one of the centers the GBS/CIDP recommends? Has anyone been helped by IVIG or other treatments for axonal polyneuropathy? Thank you for any help.