New to this forum

[Hawleyhome]

Hi! My name is melinda, and my husband has been diagnosed with Azoor? Autoimmune Retinopathy? We have been to numerous physicians, starting in Little Rock, to Memphis, to St. Louis, to Dallas, to New York, and finally to Ann Arbor to see Dr.H. The physician in Dallas in March of 2012 decided that David had autoimmune retinopathy. We had been to the Texas Retinal Foundation for numerous test. David had the blood draw for antibodies, and we did a round of IVIG. No noticeable difference, and went on to Immuran( which he could not tolerate) then to Cellcept, Prednisone. All x-rays, MRI's, CT's, and Pet scans are normal. No evidence or any malignancy. No evidence of any melonoma's or skin lesions. In August we went to New York to see Dr. Odel, and Dr. Yannuzi. They thought he had autoimmune retinopathy, even though so far no antibodies had shown up. But they decided to stop the drugs. We even checked for cobalt poisioning because he has a total hip replacement. After being off the drugs for a while, more labs were drawn, this time sent to UC Davis. No antibodies showed up, so we redrew lab again a few weeks later.

We saw Dr. H in April 2013, and started on the "Cocktail". Unfortunately we have not seen any stabalization in his vision. He has a large scotoma centrally in the left eye, and the right eye is getting progressively worse.

Now to the questions! We have seen a low vision Dr. here in LR, and have numerous pairs of glasses to block the light, ranging from yellow to dark grey, to dark brown. I read in one post something about Corning 550's or 527's. The sunlight, and glare are so severe that for days after being outside for one day, he has difficulty seeing anything because of the glare. Of course he wears a hat, and two pair of polarized glasses, one is a pair of clip ons, with a pair of wrap around from the low vision Dr.
Does anyone have any suggestions?

[Mike Bartolatz]

first of all welcome to the group!

Azoor or Air are terrible forms of uveitis that are extremely difficult to treat. DR H is the specialist with the most knowledge on this condition.

they make goggles that fit snuggly to the face with foam between the frame and the face so no light can get behind them.
they come with several interchangeable lenses of various colors and can be made in prescription to correct vision. I don't know the brands but you can do an online search for them and he might be able to have then tinted even darker.
welding goggles might help too as an aside. there are multiple tints available for them as well but they might be too dark for practical use.
please respond in the general discussion forum as you can't continue this thread as only moderators can reply in this introduction forum.

wish you the best,
Mike Bartolatz