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Old 02-24-2013, 05:08 AM   #2
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Re: Where to turn from here

Hello and welcome. I'm sorry for your wife's problems and your shared worry. Has she seen a rheumatologist &/or had all the usual auto-antibody tests for conditions with which scleritis is associated? For example, I've seen RA, lupus, giant cell arteritis, and Wegener's listed---but there may be more, I don't know (sorry).

I recall someone on the lupus board (last 6 months or so?) struggling greatly with optic neuritis, which made her doctors also consider giant cell arteritis and something else. That may/may not be helpful reading...

You could try an "Advanced Search" and "Find a Board" (hyperlinks in blue bar above) to search for scleritis and the AI's you want to read more about.

Another path might be "super eye specialists", like Wills in Philadelphia; and there are other highly rated eye institutions in other parts the country. Or teaching hospitals, like those known for diagnosing the hard-to-diagnose (Mayo, Cleveland Clinic, etc.). If any of her doctors know doctors at such places, maybe they could reach out for you.

I wish I knew more (lupus but no eye issues). I hope others chip in soon. Sincerely, Vee

Last edited by VeeJ; 02-24-2013 at 05:45 AM. Reason: to correct eye institution names