Ocular Histoplasmosis Community Group
A support board for people living with ocular histoplasmosis.
I was diagnosed with Presumed Ocular Histoplasmosis Syndrome this last November. I have received three injections so far and go back tomorrow because I've noticed a change in my vision but it might be nothing. It's very slight.
I have so many questions and maddeningly few answers. What can I expect (hopefully from those of you who have been on Avastin for a few years at least) to be a side affect if any from so many injections? Have they always continued to work for you?
If your histo has gone dormant, what were your stress levels? How do you eat? High in fruits, veggies, and few bad foods or vice versa or somewhere in the middle? Do you take vitamins? Do you try not to worry and stress about it or do you without being able to help it? What do you think helps you control the disease, if anything at all?
What is your experience, living with histoplasmosis and what treatments have you tried that have worked and haven't?
I see Dr. Russel at the University of Iowa and I have only met with him once, though the doctors who administer the injections and intelligent and knowledgeable, however speculative the information is.
I'd love simply to hear how you live with ocular histoplasmosis. It's hard to come to terms with but I think I'm getting there. What I fear the most is obviously not being able to see my loved ones and do the things I love, but more so having those things taken away one at a time. That seems worse than it all going at once. But I will keep a positive outlook as best I can.
I have so many questions and maddeningly few answers. What can I expect (hopefully from those of you who have been on Avastin for a few years at least) to be a side affect if any from so many injections? Have they always continued to work for you?
If your histo has gone dormant, what were your stress levels? How do you eat? High in fruits, veggies, and few bad foods or vice versa or somewhere in the middle? Do you take vitamins? Do you try not to worry and stress about it or do you without being able to help it? What do you think helps you control the disease, if anything at all?
What is your experience, living with histoplasmosis and what treatments have you tried that have worked and haven't?
I see Dr. Russel at the University of Iowa and I have only met with him once, though the doctors who administer the injections and intelligent and knowledgeable, however speculative the information is.
I'd love simply to hear how you live with ocular histoplasmosis. It's hard to come to terms with but I think I'm getting there. What I fear the most is obviously not being able to see my loved ones and do the things I love, but more so having those things taken away one at a time. That seems worse than it all going at once. But I will keep a positive outlook as best I can.
Welcome to the club :
I've had five injections since being diagnosed nearly three years ago. Not too bad. I've actually gotten used to them. In fact I’m going to record my next injection and post it to Facebook. All my friends want to see what it’s like to have a needle go into your eye! I mean it's better to get the shot than live with the small blurry spot in my left eye getting worse right?
Each time my eye has responded really well to the injection and it's been a while since my last. I have eye exams every three months but by now I'll know going in if I need an injection or not.
Although there's no clinically proven link between POHS and stress I do believe there’s a connection. I went 35 years without incident and had my first issue the week my wife, daughter and I were moving, trying to sell our home, build a new one and line up my new career. The stress was certainly high to say the least. Similarly, the last time I required injections coincided with another equally stressful point in my life. Since then I’ve decided to get healthy. I’ve lost 45 pounds by exercising and eating better. I’m able to take the diagnosis and injections a little less serious given the fact that my eyes respond so well to the medication. It’s nice that it’s not contributing to my overall stress level.
Do you know what an Amsler Grid is? If not Google it, print one off and check your eyes with it often. I keep one at my desk and test myself a couple times a week. I printed off my Amsler Grid from allaboutvision.com
The good thing about being diagnosed with POHS is knowing what’s going on and being able to stay on top of things. I’ve read too many stories about people that lost significant portions of their vision because they waited too long to go see their doctor. So stay on top of things like it sounds like you’re doing and don’t stress out about it. The medicine is good. It’ll help things in check.
Jeff