My Experience with Uveitis: by Nikki

My name is Nikki, I am a Black American female. My bout with Uveitis started in 1983. I was away at college and was having photosensitivity. I went to the infirmary and was referred to an off campus eye doctor. He took pictures of my eye and determined that I had uveitis in my right eye. I got a shot and started drop treatment. Within a few months of that, I got it in my left eye. My dad is an Anesthetist and had mentioned my problem to one of his eye doctor friends at the hospital. He did a vigorous regimen of steroid drops and got rid of it within a month. I went for almost 7 years without another bout. Then, I moved to LA and got it again. The doctor was completely clueless about the disease. An internal medicine doctor told me that he didn’t know why I had it, there wasn’t much known about it, and I’d just have to deal with it. I caught conjunctivitis in my other eye while being treated in the doctor’s office. I was miserable and couldn’t stand any light and was all alone. He had me on oral steroids and I gained 30 pounds in a month. Nothing I did helped to keep the weight off. He ended up sending me to a retina doctor, who made a determination to inject my eye. The doctor basically let me go soon afterwards. About 4 months later, I decided to go to a different doctor. He told me that it was still in my eye and treated me. He was really nice. My insurance didn’t cover him and he only charged me 20.00 per visit. He also told me to go get tested to see why I had it.

I went to this other doctor and she made me go through every test imaginable (even a colonoscopy ð very embarrassing). The first disease she came up with was Lou Gehrigs disease. I called my parents (who are on the east coast) in tears. My dad was stunned. He said there was no way. All I could think of was that I was 24 and who was going to want me. The next week I get a call and she says, no you don’t have Lou Gehrigs, you have a borderline case of Systemic Lupus. I felt like she was just spinning a wheel of disease or something. I called my parents again and they couldn’t believe that either. I walked around for at least 7 months thinking I had Lupus. I went to a rheumatologist and he did some tests (my stepmother was convinced that I had arthritis). My dad has ankylosing spondylitis and his spine is now fused. The doctor told me I definitely didn’t have Lupus and couldn’t believe someone told me that. He said that I had ankylosing spondylitis, which can cause the Uveitis. Finally, I had a reason. I had a basketball accident in high school and ended up with Sciatica on both sides of my body and basically, had major problems walking for years after that (my flat feet and turned in ankles doesn’t help much). He believed it might have been triggered from that.

I went for 10 more years without having another bout and in January 2001, I had another one. I was treated for 5 months with drops and also had an injection. I tend to get very bad bouts. Then, in January of 2002, I got it again. It was misdiagnosed at first as conjunctivitis (probably because of my scarring, although, I did mention I had Uveitis in the past). I am still on the drops (this is my last week) and I had an injection. I’m experiencing a lot of problems with water retention and unexplained weight gained (very rounded like when I was on the oral steroids). I feel like I’m 90 years old (maybe that is even an insult to a 90 year old). I joke that when I met my husband, I made him sign a contract that he was aware of all my physical maladies and still was willing to love me. My eye site in my right eye is still 20/20. I’m at 20/30 in left eye right but I had to fight hard for that. Everything is blurring and kind of goes in and out of focus. If I close my right eye now, everything viewed from my left eye seems to get smaller and farther away. I have really bad floaters as well. I just hope that the steroid treatment hasn’t adversely affected me.

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