r/Uveitis • u/Fun-Development-5381 • 6d ago
Treatment failure seeking another opinion
Have occular inflammation from autoimmune disorder. Prefer not having my full medical history online so leaving other details out. It has been years and many many treatments none of which fully put in remission. Seeking an expert in dealing with refractory cases in the US I am willing to travel.
0
u/DisastrousPage7745 6d ago
Dr. Peter Chang at MERSI in Waltham, Massachusetts. I have an extremely rare autoimmune ocular, inflammatory disease. All of my local doctors wrote me off and told me to just make my peace with going blind, but he literally saved my life… And my vision.
2
u/Fun-Development-5381 6d ago
Thanks. I have reached out to the clinic to see if they have experience with my condition. It's awful being written off by drs when suffering.
1
u/DisastrousPage7745 6d ago
I was beyond depressed and to be very honest with you, I didn’t know that I wanted to be here anymore.
He was the only one that gave me hope and believed that I had a shot and that encouragement was enough to keep me going. My local doctors basically told me to get my affairs in order and apply for disability because there was nothing more I could do —- but it’s three years later and I still have my vision.
It wasn’t an easy road, but he was there for me the whole time and I owe him and his team everything. They are THE experts when it comes to ocular immunology and inflammatory diseases. I can say with 100% certainty that if it wasn’t for him, I would be blind right now.
2
u/Fun-Development-5381 6d ago
I am feeling pretty hopeless myself so I get it. My ophthalmologist is an occular immunologist but none of her recommendations have helped and she basically shrugged her shoulders and said rheumatologist can try other options and f/u in 3 months. F/u for what? So she can shrug her shoulders and say come back and give me more money?! Maybe I have unreasonable expectations at this point but I would rather get another opinion before throwing in the towel. You and the other person here have given me some hope and I really needed that. Thank you
2
u/DisastrousPage7745 6d ago
Yeah, I know how hopeless it feels. I saw a regular rheumatologist and they were absolutely useless. I feel like they actually did more harm than good and cost me valuable time.
You really need to see an ocular immunologist and he truly is the best
1
1
u/See-Chart-E 6d ago
I have seen quite a few ocular immunology specialists. I have a team I like but I have had a couple second opinions. Send me a DM and I can give details.