Reply To: Axonal Guillan Barre (AMAN)

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!