I am writing on behalf of my fiance'. In February 2010 he woke up with redness in his left eye and was having some pain. He went to the doctor immediately and was told it was pink eye. Several months went by and after trying several eye drops and medications the doctor finally realized it was not pink eye and referred him to a retinal specialists. He has seen many doctors since then.
His condition in his left eye slowly worsened and he now has no vision in that eye at all. In August of 2011 it started to spread to his right eye. He was hospitalized at that time and the hospital ran various tests (HIV, diabetes, sarcoidosis, and a multitude of other diseases) but all tests came back negative. He was told his retinas were inflamed and that he had blood accumulating behind his eye. The still to this day can not find the underlying cause. He has been told it could be incomplete Behcets but that he does not fit all the symptoms.
He is seeing Dr. ______ in Geneva IL and also a rheumatologists. They together have been trying different medications and treatments but things keep getting worse. He currently takes prednisone daily, methotrexate weekly, durzol eye drops daily and has also been getting Remicade infusions every 4-6 weeks. He also received periodic injections in his right eye that do temporarily improve his vision however they have also caused the progression of cataracts. During his last doctors visit with Dr. ____ he was told he now has steroid induced glaucoma and will eventually lose the remaining vision he has left in his left eye. They can not say if surgery would help since they can not find the underlying cause of the inflammation and they can't really see what is behind the eye due to the damage already present preventing them from getting a clear view during visits.
He is slowly running out of hope and due to the numerous doctor visits, treatments and medication, the financial burden is overwhelming.
My fiance is only 31 years old and has not really had any other major health issues. Please advise of any options or other avenues we could possibly take to try to find a diagnosis and we realize we may not reverse the damage done, but are hoping to save the little vision he has left.