Back in maybe January or February I got an e-mail from my mother, and one thing she casually mentioned was that dad was still having problems with his eyes. Huh? My brother and I were not informed about this. Apparently, my father has had some severe inflamation around his eyeballs. Every time he rotated his eyeballs in the sockets, he would have pain. And most people rotate their eyeballs thousands of times a day.
I’m not sure if it affects his vision, but I know there were a few times when family members volunteered to drive him places, as they were really worried about how his condition might affect his driving.
The best diagnosis he got was “Non-specific orbital inflammation.” It turns out that that’s a fancy term for “We don’t know.” The only thing that’s helped so far is fairly large doses of prednisone. He’s been cutting down on those gradually, but he can’t seem to get fully off of them. His other options are autoimmune modulation drugs or low level radiation, both of which are risky.
What really sucks is that it’s such a rare condition that no doctor has any experience with it. He’s been to, I believe, 5 doctors in 11 appointments, and none of them really have any idea of what’s going on. On top of that, a lot of appointments have been cancelled or postponed due to emergency surgeries, golf games, or whatever. My parents have spent a lot of time in waiting rooms only to see no one.
I know how frustrating this is for me. I can’t imagine what it’s like for him and mom.
I can understand your frustration, especially if you’re not getting the news immediately. My family has a bad habit of not letting me know about stuff “to not worry” me. but they don’t realize that when they call to tell you everything’s ok, they end up telling you the story and you go through all the emotions anyways!
My sister is having eye problems right now - uveitis, it seems. She does have the HLA-B27 antigen, and an associated disease. It’s really frustrating for her, and there is rarely more news than “she’s going to see the doctor again”. Her vision has deteriorated rapidly over the past several years (though she is far from blind at this point…it’s just that she once had better than 20/20 vision). Not to mention some other issues that might be developing. Life is just too stressful
It was a little disconcerting at first not being informed about his condition. I don’t think that anyone was trying to spare anyone’s feelings, I think that they just assumed that we somehow already knew.
The frustrating part is that the doctors just don’t know what to do. I don’t think that my father is in any danger of going blind from this, but I really hate to see him in pain. And it’s a horrible reminder that as he ages, more and more things will go wrong, and eventually he won’t be able to keep up with them. I hate the idea of not having him around.
It sounds like your sister is going through a lot of the same thing. Is there a chance of a good prognosis for her?
At least with the uveitis diagnosis, there are a variety of treatments out there, as well as research studies if the sister thinks that might be something she’d be interested in. I’m sorry to hear about your dad’s diagnosis, tdn, that sounds really frustrating.
I don’t know what the prognosis is - what little information I have comes from my mom, who is horrible at relaying medical information. My sister is overwhelmed with school and life and doesn’t really want to talk about it all with me on the phone.
As for treatments; I think she’s trying whatever they are throwing at her, but she is immuno-compromised already, thanks to other medicine she’s on. Between visits to two different ophthalmologists, her rheumatologist in the province she’s in as well as calls to her rheumatologist in Québec (treating her for nearly 15 years…she’s 26 now), I’m sure she’s getting the best treatment possible.
She’s just had to put up with so much pain (literally, every goddamned day of her life) and frustration and illness in her life, it all seems so unfair.
