A.S. Face 0897: Liz

Face 897

For years I’ve been dealing with pain in my joints and back, with no explanation. Starting a few years ago, every few months one of my eyes would swell, with excruciating pain. It would trade off between my two eyes, and I would endure redness, pain, and blindness. I went to many doctors, trying to find a reason why my eyes would sometimes hurt so harshly and go blind, and got numerous incorrect diagnosis’s. Finally fed up, I went to a far away hospital when my left eye was in so much pain I couldn’t stand it, completely blind, and it looked like my iris was filling with puss. The doctor there told me I had uveitis, and started asking me about pain. I had never thought that my joint pain was related, but he insisted on testing my blood, and I was x-rayed and diagnosed with ankylosing spondylitis. As it turns out, the blindness was from so many white blood cells in my eye, and was unable to see through so many. By then it was too late to repair my eyes, my left eye is nearly blind from all the damage. In a matter of weeks, I went from perfect vision to needing glasses to be able to see 4 feet in front of me.

Not everyone with AS will experience uveitis, but in my case it was what lead to doctors taking me seriously about my pain. I am currently undergoing treatment, and hoping for the best. I am the face of AS, in Shelton, CT.

Connecticut, United States of America

7 Responses to “A.S. Face 0897: Liz”

  1. Dear Liz,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Thank for your story. I cannot believe that the Dr’s did not spot the uveitis! I got it for the first time last year and the optician spotted it straight away and I was sent to the local emergency eye clinic within 2 hours and had it injected with steriods, then drops for 3 months, that happened on Easter Sunday which is a bank holiday in the UK, so they took it very seriously! 2 weeks later I was diagnosed with AS. I am very lucky that we have an eye clinic I can just walk into if we are worried.

    Sorry that you have lost some of your sight 😦 (hug) I think your story will hopefully make people realise that they need to push the Dr’s if they have eye problems with AS, sight is so important and very common with AS.

    Hope you are able to control the uveitis now and suffer no further sight loss. xx

  3. It’s medical negligence to have lost any of your sight, that should not have happened, even here in no mans land doctors quickly diagnosed my iritis back in the early 90s.

  4. Oh Liz…I’m so sorry. I too am an “iritis’er”…It is NOT your fault…it was the stupid doctors. I will NOT have you beat yourself up about this. I won’t allow it. I haven’t had a flare for 8 years now…cause of the Enbrel…and I just know you’ll never have it again. I’ll guarantee your “rheumy” will be pissed! You’re gonna be promoted past all the chicken crap NSAIDS now, and go right to the top flight medicine.

    Now, my Uncle lost his eye 50 years ago…and he has been very successful with his one eye…so , you will adjust, you will get past this, and it won’t screw up your life.

  5. It is dreadful that your uveitis went on uncontrolled. I do some work for Arthritis Research UK and I am asking them to consider the possibility of everyone with uveitus being tested for AS as that is how I was diagnosed as well. Stephen Face 52

  6. Thanks for sharing your story. I believe every story on this site helps another receive a dx faster (hopefully before so much damage) by demanding awareness. If you ever need to talk I am next town over in Monroe. Face #125

  7. I wish doctors would listen early in the disease stage. So sorry for the delay.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: