Reply To: Axonal Guillan Barre (AMAN)

Well, I’m glad you found my post! We really are a rare group! The symptoms you describe sound like AMAN to me, although it’s always the EMG and nerve biopsy that can conclusively diagnosis it. I am walking proof that IVIG is a possible intervention for axonal neuropathy! At the onset of my GB variant I was given a 5-day treatment of IVIG by mistake. My neurologist was unfamiliar with the medical findings that says that IVIG is not effective for AMAN, so she treated me as she would have for any GB patient…but it worked! It reversed the paralysis/numbness that I showed, and after a week in the hospital, I walked out with only minor ambulatory problems. The long-term problems manifested after I had initially recovered. Within 2 months I had the same symptoms back and worse. It was then that I started treatment with Dr. Aggarwhal at Northwestern in Chicago. He did another EMG and my numbers had bottomed out. I showed worsening problems in my nerves and the damage had moved into my muscles.

Dr. Aggarwhal prescribed IVIG treatments because it had worked for me in the hospital when I was diagnosed. My Blue Cross/Blue Shield of Illinois insurance denied me multiple times because IVIG was shown to be ineffective for AMAN. Dr. Aggarwhal and Axelecare (my IVIG provider) filed multiple appeals and went as far as submitting my case to the Illinois Insurance Commission (which handles insurance appeals when it gets that far.) The State of Illinois overturned BC/BS’s denials and after 2 months of fighting I was cleared for IVIG. I received 5 loading doses of IVIG in August of 2013 and saw immediate relief from many of my issues. Since that time I have received 2 doses per month and I am holding the progressive problems with AMAN at bay. My hands healed completely, my muscle damage was reversed, and the strength in my lower legs came back. My sensory nerves in my feet are permanently damaged, but it only causes me numbness, and pain when I stand too long. Before IVIG I was headed for a wheelchair.

There has been very little study on how IVIG may treat AMAN patients because there are very few of us. You need a neurologist that will fight for you for possible treatment options. IVIG has saved my life and I owe it all to my neurologist that took the time to sit through multiple peer review processes to get me the treatment that works for me. The bad news is that my AMAN is progressive without IVIG. Apparently the virus the tripped my immune system caused a permanent problem. In October of 2014 I developed a massive preliminary embolism that was caused by IVIG. That is a rare side effect of IVIG, but unfortunately I drew a second rare card. I had 8 weeks off of IVIG and my problems with numbness, foot drop, balance and neuropathy pain resurfaced after about 4 weeks without IVIG. Now I am on a blood thinner along with my IVIG and have had no further problems.

If your insurance will allow you to see Dr. Aggarwhal at Northwestern, I would make an appointment as soon as possible. You are welcome to tell him that Jennifer Clifford referred you. I am his only axonal GB patient, so he will for sure know me! He is with Lakeshore Medical Associates and the number is 312-926-6000.

Get active and get busy fighting against this horrible disease!

Jennifer