Pupil Dysfunction + AAG Questions

[missy]

Hi everyone!

I've been relentlessly googling as the waitlist to see an autonomic specialist in my country is a few years long and I figured I better educate myself while I wait. I've been sick for most of my life but other symptoms/issues took the forefront and my autonomic symptoms were never my biggest complaint - until recently, when they've begun to ruin my life and I had to stop working. Because I have EDS-hypermobility and a provisional MCAS diagnosis, I've been referred to the autonomic specialist for POTS testing as they usually go hand in hand. But in my research about POTS, I came across AAG and how one of the symptoms of AAG is Adie's tonic pupil/pupil dysfunction. 

Does anyone know how often serious pupillary autonomic dysfunction/damage would be seen in other forms of dysautonomia or is it just AAG? I was diagnosed with Adie's tonic pupils 10 years ago, and both my pupils are permanently fixed and dilated - they don't react at all, they've been totally "paralyzed" since I was 15 (I'm 25 now). 

I've always felt the Adie's was connected to something we were missing because it seems like too weird of a coincidence otherwise. However, my autonomic symptoms aren't overwhelming severe; there are good days and bad, but up until a few months ago, I was mostly able to work full time and live kinda normal life (in between surgeries and medical appts, that is!).

I have a large list of symptoms, but the most relevant are temperature regulation issues, postural dizziness, pre syncope, postural headaches, bouts of tachycardia, some bradycardia, shortness of breath, fatigue, frequent urination, nausea, abdominal pain/GI issues, etc and OH (diagnosed last year, my usual blood pressure is 90/something).

Would AAG or any dysautonomia cause an elevation in inflammatory levels like ESR? (A shot in the dark but I thought I'd try!) 

Could POTS (probably a more likely cause for my issues) still be connected to my pupil problems?

I appreciate anyone to takes the time to read this mini novel - I'm so sorry it was this long!!! Thanks for any insight you may have, I can't tell you how much I appreciate it. Have a great day!!! 

[corina]

Hi missy! Sorry I don't have any answers, just wanted to say hi and welcome! Hope others will be able to help answer your questions!

[Amyschi]

Hi Missy,

Welcome - so sorry you have to be here, but glad you are, as it is very helpful to talk with others who understand what you are going through.  So sorry too that you have had to quit working so young, but it is certainly understandable.   It is impossible to work when dealing with so many issues.  Hope you will be able to see the autonomic specialist soon.  I found that sometimes they will tell you later than they can actually get you in.  But I an in US - not sure where you are.  In other countries with less specialists, indeed it may take longer.  I don't have an answer about the pupillary dysfunction, but I think I've read that pupillary accommodation problems are common with dysautonomias in general, but hopefully once you are seen, they can put all the pieces together and be able to alleviate some of your symptoms.  Hang in there.