kangaSue
Senior Member
- Messages
- 1,857
- Location
- Brisbane, Australia
I'm looking into Autoimmune Autonomic Ganglionopathy as the underlying cause for my chronic G.I. dysfunctions, i.e. Gastroparesis, Chronic Mesenteric Ischemia and Chronic Intestinal Pseudo-obstruction of the small bowel. I fit symptomatically for AAG after recently being diagnosed with Restricted Autonomic Neuropathy in an autonomic function test panel but haven't had the antibody test for a3-nAChR which should confirm it, except you can also be seronegative and still have AAG.
I don't have ME/CFS myself but I see that AAG has been known to occur in some with ME/CFS. It falls in to the category of a channelopathy which can occur in chronic conditions, be that from inflammation or because of ion channel antibodies.
I'm not computer savvy enough to compile a poll but I'm interested in knowing how many here with ME/CFS has been tested for AAG. The symptoms seem to have a large overlap with those often discussed in connection with autonomic dysfunction in ME/CFS, i.e. orthostatic hypotension or POTS, gastrointestinal dysmotility, anhidrosis, bladder dysfunction, sicca symptoms, impaired pupillary light reflex, brain fog.
Everything I read says this is a rare condition, I have asked a couple of doctors about it before but it was quickly dismissed as, according to most of the literature, AAG is usually described as involving a rapid onset of symptoms but latest research makes a case for it to be also seen as a slowly progressive disorder, a restricted form of AAG where a low antibody count to a3-nAChR is found and this has been found to be the cause of gastroparesis as a stand alone autonnomic dysfunction of G.I. dysmotility.
http://www.hindawi.com/journals/ad/2013/549465/
http://archneur.jamanetwork.com/article.aspx?articleid=785281
I don't have ME/CFS myself but I see that AAG has been known to occur in some with ME/CFS. It falls in to the category of a channelopathy which can occur in chronic conditions, be that from inflammation or because of ion channel antibodies.
I'm not computer savvy enough to compile a poll but I'm interested in knowing how many here with ME/CFS has been tested for AAG. The symptoms seem to have a large overlap with those often discussed in connection with autonomic dysfunction in ME/CFS, i.e. orthostatic hypotension or POTS, gastrointestinal dysmotility, anhidrosis, bladder dysfunction, sicca symptoms, impaired pupillary light reflex, brain fog.
Everything I read says this is a rare condition, I have asked a couple of doctors about it before but it was quickly dismissed as, according to most of the literature, AAG is usually described as involving a rapid onset of symptoms but latest research makes a case for it to be also seen as a slowly progressive disorder, a restricted form of AAG where a low antibody count to a3-nAChR is found and this has been found to be the cause of gastroparesis as a stand alone autonnomic dysfunction of G.I. dysmotility.
http://www.hindawi.com/journals/ad/2013/549465/
http://archneur.jamanetwork.com/article.aspx?articleid=785281