GH – thank you for the information. I have been diagnosed with axonal polyneuropathy and have been told that there is no treatment. Was the onset of your condition gradual or sudden onset? And, were you also told there was no treatment? Thank you again !

Oh dear! Now I hope I am in the right place!

Thank you, Jim! And, thank you for linking me to this thread. I made an appointment with Dr. Aggarwhal for June 22 (thanks to Jennifer and her very helpful post!). I don’t know what I would do without your help and the help of others … happy that I stumbled across this site a couple of months ago. I was hitting dead ends and now, no matter what the outcome, I feel I am on the right track.

Thank you so much, Jennifer! I am very, VERY grateful for the time you took to tell your story. I will call Dr. Aggarwhal now – I live downtown so he’s right in the neighborhood. And, I wish you the very best with your health. Your story, like so many others on this site is an inspiration to people like me who are determined to — at the very least get a diagnosis! And, even more it gives me hope that I can get treatment. You are a pioneer for sure! Even though IVIG was at first thought to be a medical mistake you opened a path to stopping progression of “this horrible disease” as only someone who suffers from AMAN could understand.

Thank you again … I’ll follow up with you and others on the site on my progress (numb and tingling fingers are crossed!).

Renee

Thank you, Michael. I’m in Chicago so perhaps I should see your Neurologist at Northwestern? Or, do they have a whole group of Neuros who are familiar with axonal neuropathies?

Thank you for the prompt reply! I’ll follow the links to learn more and also contact one of the centers of excellence. I am very appreciative and once again hopeful. I am not sure which is more difficult – the symptoms or the search for diagnosis!

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.

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!