Autoimmune Autoimmune Gangliopathy -- Eye Test

[sue1234]

Reading through the post Rama brought back up made me look a little on AAG, again. I keep the idea in the back of my mind that the neuro in Dallas tests for this and works with the patients if they have it. But, hoping Mayo addresses all this stuff when I go back. Anyway, this paper released by the Dallas doctor is pretty interesting:

http://www.ncbi.nlm.nih.gov/pubmed/22232207

Basically, it shows that patients with AAG have pupils that don't stay constricted or they fluctuate during the light shining on them. They compared them to normals and other non-AAG dysautonomic people, who both had pupils that constricted properly. So, I'm thinking this might equate to the "poor man's" tilt test. I asked my husband to shine the penlight on my pupils to see if they stay constricted or waver. He said they did nothing!! That would kind of make sense, as I have never worn sunglasses my whole life, as the sun never bothered my eyes, ever...until a few years ago after POTS hit. Now I'm like a vampire in the sun, blinded.

Wouldn't it be nice if what we had was treatable?

[ramakentesh]

Ive had POTS eight 1/2 years and my pupils were abnormal for only two weeks of that time. I had one pupil that didnt respond to light. Also had some eye lid lag a few times as well. When my pupil (well it was really only one) was playing up it was a different size to the other one and people all over work came up to have a look. I have photos somewhere.

In terms of pupil behaviour mine are often tiny rather than dilated. I was worried that this means I had too much parasympathetic activity but mestinon has worked for me so far and it also makes my pupils small, but my vision is 100% times better on mestinon.

My doc thinks I have the autoimmune variety because of comorbid autoimmunity, the pupil thing and mainly my response to mestinon. Well actually that is now my official diagnosis. Autoimmune POTS - I want to use autoimmune gangliopathy though as it sounds so much cooler.

Weird thing about an autoimmune activation against nicotinic a3 receptors is that it would effect BOTH the parasympathetic and sympathetic systems. It could reduce sympathetic activity and parasympathetic activity with compensatory sympathetic hypersensitivity (alpha and beta supersensitivity), or could just alter para/symp balance which alone can alter baroreflex sensitivity (abnormal in some POTS) and cerebral autoregulation (abnormal in most or all POTS).

Alternativelt different patients might have different levels or ratios of activating v binding/blocking autoantibodies as well. Some might have all activating

[L4UR3N]

My pupils are definitely messed up, but I tested negative for the antibodies. They say that a negative antibody test doesnt necessarily mean you that you dont have it --it's just not a definite "yes". I would really like I definite "yes" one of these days .

I have constricted pupils too Rama, and I am incredibly sensitive to light. Typically dilated pupils mean SNS activation, but I seem to be the opposite if that is possible, lol. I also have anisocoria (uneven pupil size), but it's pretty mild--It's always my left pupil that is bigger though. I also have ptosis of my left eyelid that comes and goes. As a side note, my sister has HUUUUGE pupils and has Inappropriate Sinus Tachycardia (a sister to hyperadrenergic POTS)

I would love to try Mestinon but havent yet.

[ramakentesh]

Well yeah mestinon has helped me with all these types of symptoms for sure.

[ramakentesh]

This is an interesting area. In the AAG - there is a reduction in BOTH parasympathetic and sympathetic nervous system activity because the a3 receptors are being blocked by annoying autoantibodies. Throw in perhaps sympathetic hypersensitivity to compensate and theoretically you can explain a lot of the symptoms of POTS and perhaps why poly-medication works better than monotherapy - perhaps something to boost the parasympathetic as well as something else to boost the sympathetic systems.

[sue1234]

Well, Rama, you just keep thinking and figuring this out for us!! I am going to ask my neuro about this when I have my appt. If for any reason she doesn't want to look into it, I will go to the doctor in Dallas. I am at the point of leaving no stone unturned!

[ramakentesh]

What im finding is that mestonin fixes everything for me other than the profound fatigue. I dont know if this is a breakthrough symptom or a sign that the sympath side still needs a boost (which i have been doing with low dose tea).