While reading the posts here I am curious. I am the moderator of a support group on Yahoo with 17 women diagnosed with AZOOR. We have all added information on our conditions and symptoms. Would Dr. John C Hagan III, MD, be willing to review the posts? I feel that comparing notes would be a step, (even if a small one) in the right direction to understanding the condition.
I am so over-committed on time I cannot do any more (I' have large practice, I edit a Medical journal, I'm a father, husband, brother, grandfather). Dr. Kutryb and I have pledged to answer all the Expert Forum questions. I try and answer as many of the patient to patient questions as I can but the more popular the site gets (its one of the fastest growing on MedHelp.Org) the more impossible the time demands get.
I was diagnosed with AZOOR this year. My vision is extremely weird but I do not give up. The doctors don't know anything about this diease here in America. I reached out to Harvard research Center for the eyes and the sciencist that I spoke had never heard of it and had to go to the internet. I am frustrated as I am a healthly woman and never been sick a day in my life. From what I have research on my own Japan and England are the experts on AZOOR. I was told what is lost is lost, I continue to see double, I hate that.
I'd suggest that you try writing to the authors of the research articles, most of which have contact information. (I sent emails which praised the article and contained a short summary of my history/symptoms/questions.) You might be surprised at how many responses you will receive. I have a different eye condition than you (in my case, it's retinally-induced aniseikonia), and the local specialists I saw told me to live with my symptoms, which included an eye that teared continuously and impending double vision. I eventually found an effective treatment from a Dutch researcher. Good luck, and don't give up!
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