July 22, 2016 at 3:03 pm
Wow! That is really interesting….because if you look up AMAN enough, you’ll see that the majority of cases are in southeast Asia. One of the questions most of us in the US probably ask ourselves is…”Where the hell did I pick up this virus?” I’ve never been anywhere in Asia, but I do travel to Costa Rica one or two times a year. I assume I probably picked it up in an airport somewhere! You on the other hand probably have no question of where you got it. You’re also pretty lucky that you’ve had a relatively complete recovery because AMAN is slower to progress, but often chronic. Glad to know you have rounded the bend!July 2, 2016 at 3:04 pm
Wow, I’m glad that people who are dealing with a GB variant have found my thread, but I’m sorry to hear that people need this thread! I’m happy to share that I was off-communication for some time because I just got back from leading a 12-day trip to Costa Rica for my high school students. The good news is that I am a living reminder that AMAN is not a wheel-chair prognosis. I was leading trips to Costa Rica before my GB/AMAN and I am still leading them. I am not what I was before my health crisis, but I am way beyond what I thought I would be. My trip was limited on what I could do in a day, but I was there and I managed.
Ryan_Wilson, you should really ask your neurologist to look at all possibilities for you, including IVIG. The scientific literature/studies say that IVIG isn’t effective for AMAN, but I’m living proof that it is. I still have numbness/neuropathy pain in my lower legs, but it’s manageable. My balance is still terrible, so that and the sensory nerve problems are probably permanent at this point. But, my motor skills have improved greatly! I still suffer from fatigue, but after 3 &1/2 years, I’ve learned how to manage my symptoms. You have to get serious about finding a neurologist that can fight for you and your treatment options.
All of us need to be looking toward stem cell transplants as a permanent cure. Long term AMAN and GB problems are because a virus tripped our own immune system to attack our nervous system. Those of us with chronic GB problems had a permanent virus flip to our immune system, when normal GB patients had only a temporary flip. We now have an autoimmune disorder….essentially, our own immune system sees our nervous system as a pathogen and it tries to kill it. Stem cell transplants involve harvesting a person’s own stem cells and keeping them viable. The next step is to give the patient high doses of chemotherapy to completely kill the patient’s immune system. When the patient shows zero sign of the host immune system, they are then infused with their own stem cells to regrow new immune cells. Essentially, we’ll get a new immune system without any remnants of the virus. I went through testing at Northwestern Memorial Hospital’s stem cell clinical study treatment program for CIDP (Chronic Inflammatory Deymelinating Polyneuropathy). I was denied for the clinical study because I have axonal nerve damage rather than deymelinating. I was told that they could offer the stem cell treatment under a “compassionate use” designation….but it’s not covered under insurance. You may also see in the news that stem cell transplants are showing cures for MS patients. This will be our cure, so get involved on demanding it.
Keep the faith! Get the best doctors you can! Let me know if you have any questions!June 13, 2016 at 3:18 pm
Fantastic! I hope you will get some relief! Dr. Aggarwhal has been a God-Send for me! Sending you (and everyone else on this thread) my prayers!June 8, 2016 at 12:28 pm
*** sorry, darn autocorrect, I meant pulmonary embolismJune 8, 2016 at 12:23 pm
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!
JenniferOctober 1, 2015 at 6:26 pm
Thanks for reaching out. We are an exceedingly rare group. I have a top-notch neurologist at Northwestern Memorial Hospital, and I’m his first ever AMAN patient. One thing you should know…..IVIG infusions are working for me! My initial damage hasn’t healed, but it’s preventing the progressive damage that I had until I started monthly treatments. December will mark my 3 year “anniversary” and I’m holding steady.
Let me know if you need any advice.