I know I posted about this previously, I have searched and searched and cannot find the thread. Previously to my MG diagnosis, I had MG type symptoms that waxed and waned along with chronic diarrhea and ringing in the ear, dizziness and breaking out in sweats. When I went on Mestinon, it relieved not only the MG symptoms but the others too. The only one remaining is the ringing in the ears that gets worse as the mestinon wears off. I could never understand this.

I have been doing a lot of searching on the internet while I am home on disability, particularly related to antibodies that I found, might be related.
I did not keep the links, there were only bits and pieces from different sites but here is a summary of what I found. As we all know, MG is caused by Muscle Acethylcholine receptor antibodies. But there are also ganglion and neuronal Acethylcholine receptors and antibodies too.

Neuronal are associated with memory and ganglionic with the autonomic nervous system. The autonomic nervous system has many functions, including digestion (sympathetic inhibits peristalisis, parasympathetic increases it), perspiration (excites), taste, smell. I also found some references that tinnitis may be caused by autonomic system as well as many other causes. Neuronal/ganglion Acethylcholine receptor antibodies have been associated with Autoimmune autonomic ganglionopathy (AAG), and Autoimmune gastrointestinal dysmotility (AGID). It looks like both of these autoimmune diseases have been shown that they can be successfully treated with mestinon, as well as immunosuppresants and plasmapharesis, just like MG. The various Acethylcholine receptors have subunits, some of which they share and some are unique.

My layman's research leads me to believe I may have AGID and/or AAG as well as MG. I am very excited that my symptoms make more sense to me. ANd that they can be successfully treated the same way.

Has anyone here been evaluated or found to have AGID or AAG?
thanks
kathie

This is really interesting. My brother has issues with the ganglia in his brain. He was told that his brain is deteriorating. I sent him an email to check out the AAG. I'm hoping he can get tested for the antibody.

I too have noise in my ears but it's low hums and high buzzing sounds. I've never mentioned it to the doctors because I've been too focused on my other issues, and I always forget about it. I don't notice it much during the day. I notice it more when I try to fall asleep. I never really thought about whether this could be something else.

I am going to retrace my searches and gather the links and post them.

The antibodies for AAG and AGID is referred to as Ganglionic AChR antibodies and sometimes neuronal AChR antibodies. They have similar symptoms despite the name.

Here is a pretty detail article on AAG.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677210/.

Let me know how your brother makes out.
kathie

Kathie, You might be over thinking things.

There are muscles in the ear too! You can get hyperacusis from MG.

Ringing in the ears can be caused by a lot of things, like high BP, dehydration, allergies, etc.

Bring it all up to your primary doctor and see what they think. Ringing in the ears is not fun. They might send you to an ENT for a consult. In the meantime, a fan sometimes helps to drown out the ringing. Of course, some fans can actually cause ringing!

I hope you can figure it all out.


Annie