Jamierez68- thank you for sharing your story. I am almost 12 months into dealing with progressive axonal polyneuropathy that three neurologists tell me is untreatable because my spinal fluid and nerve biopsy are normal. I did receive one IVIG treatment that did not seem to “work”. Did you have a confirmed auto immune condition?

Thank you again!

Jim-LA – thank you again for the helpful links. I finished the 5-day loading dose of IVIG last week and felt ok during the treatments. However, I would like to hear if others actually felt much worse the following week? I am in pretty bad shape: nerve pain, increased balance issues, sweating, general fatique and increased weakness in legs. Much appreciate any information … Renee.

Hi Lillie – no, I only had one test. I am diagnosed with an axonal variant based on two EMG tests so they’re going to try IVIG. I have lost sensation from toes to thighs, have weakness, pain in back and in legs plus the usual array of nerve and joint pain. Muscle twitching and jumping also in upper, lower and midsection of body.

I can walk but have foot drop and am too uncoirdinated to run.

I hope to stop progression with IVIG … And maybe recover. How are you doing now?

I am to begin IVIG on Monday and hope I am not making a mistake. Spinal fluid did not confirm GBS, but pain and numbness in feet and legs plus pain in back and abdomen make it difficult to walk. The only abnormal tests were two EMG’s showing axon damage. I am worried that perhaps I should just accept my situation?

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.

I am relatively new to this forum: A few months ago I posted asking whether a feeling of vibration throuhout the body was a symptom of an inflammatory neuropathy. This is in addition to balance problems, numb feet and ankles, leg pain, tingling, burning, etc. A member said that it was a symptom, so since that time I have been seen by a top rated neurologist who diagnoses CIDP, MS, ALS and other auto-immune and inflammatory neurological issues.

I saw her again on Friday and she is concerned about my case because of the sudden onset of symptoms. She suggested either a nerve biopsy or spinal tap to measure C reactive proteins in the fluid to detect inflammation. Do any forum members have experience with these methods for diagnosing CIDP or similar diseases? Are they definitive? And, should I do this now or wait a few months as my neurologist suggests?

Thank you for any help!