Hello everyone. Since this is a rare and often undiagnosed syndrome, I’m struggling to find people to talk to who can relate. I’m wondering how many of you are dealing with this. How is it going with the segmental hyperexcitability and the neuropathy itself? What has your treatment been and how long have you been on it? I’m currently on azathioprine (4 months) and rituximab (2 months into the first cycle). I’m looking into IVIg but I’m still undiagnosed, though I’m certain I have this—likely small fiber autonomic ganglionopathy, possibly post-viral or triggered by my thyroid. I haven’t lost motor function or proprioception yet, and I’m 5 years in. I’d appreciate any input. Thanks in advance!
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I’m dealing with autoimmune encephalitis from CNS lupus and a primary immune deficiency.
Hello! I have post-COVID autoimmune autonomic ganglionopathy along with CASPR2 autoimmune encephalitis. My biggest issues have been dysautonomia, small fiber neuropathy, and severe gastroparesis. I was diagnosed by an autonomic neurologist after antibody testing came back positive for ganglionic AChR and CASPR2. Right now, I’m on subcutaneous immunoglobulin (Xembify 20%, 26 g every other week) plus 3.0 mg of low-dose naltrexone daily. This combination has slowly started to calm the neuropathy and segmental hyperexcitability, and my dysautonomia and gastroparesis are finally improving. Around infusions, I use a small dose of dexamethasone to prevent rashes, which has helped a lot with post-treatment crashes. I’m about seven months into SCIG and have gone from barely functioning to being able to do light strength training and even some mountain biking again. I’m also five years in!
I was diagnosed with Primary Lateral Sclerosis (a rare upper motor neuron disease) in 2020. My symptoms from that were spasticity, weakness, and hyper-reflexes. However, I also had many autonomic symptoms that aren’t related to PLS, so I underwent a lot of testing. The only other positive result was a very low positive for ganglionic AChr. When I look at the symptoms for autoimmune autonomic ganglionopathy, I have almost all of them, so I’m fairly certain I have that as well. My neurologist thinks it’s possible too and has been trying to get me approved for IVIG. I’ve already had one denial, so he’s working on an appeal. It’s really frustrating. 
Hey, I have CIDP (chronic inflammatory demyelinating polyneuropathy). Basically, my immune system attacks the myelin coating on my nerves, starting from the extremities and moving inward.
I have autoimmune NLD-SFN with neuropathic POTS and dysautonomia. I tested positive for TS-HDS and have Sarcoidosis, so it’s hard to say which condition is driving the symptoms, or if it’s both. I’m scheduled to begin treatment right after the new year.
Hi, I have a very aggressive case of primary Sjögren’s, which led to SFN and autonomic dysfunction. It put me in the hospital for a week last year. I started Rituximab in May and IVIG in September, and I’m also on Cellcept and Plaquenil. These treatments together have been very helpful—not a cure, but they’ve definitely helped me get back on my feet.
I have AAG, neuropathy, and CFS, along with fasciculations. I tested positive for ACHR. I just finished 10 months of IVIG (Gamunex), but I had to stop because of allergic reactions, and my doctor didn’t think I was progressing much. Since stopping, I’ve realized my symptoms were actually worse than I thought, so it might have been helping subtly. I have an appointment with an AAG specialist in a few days. I’ve also been looking into Nervala (i buy here), an antioxidant supplement for nerve support, to see if it helps with the neuropathy. I’d love to connect with anyone else who has AAG. Since it’s so rare, it would be good to form a group to share our stories and treatments.
Hello, would it be okay if I DM’d you? I’m still undiagnosed, but my doctor mentioned AAG as a last-resort possibility. I’m trying to see if my symptoms match because this has been so bizarre that it has my doctor completely stumped.