White, eye pain, dryness, inflammation for over a year. Autoimmune condition called UCTD. I feel so hopeless. I'm 28 and I can't go on like this. It feels like there is no doctor or treatment that will help. On top of the symptoms, I think the thing that frustrates the most is how hard it is to find a good dry eye specialist.

I finally found one back in December, Dr jaine at UIC Chicago. It was a bit of a drive I hoped it would be worth it. My symptoms are dryness, irritation from air on the eyes, even if I'm just walking outside or sometimes around the house or whatever, I can feel it. The worst thing that happens is in the middle of the night sometimes I wake up with severe pain that typically lasts the whole following day. From everything I have read online it sounds like RCE, but I'll get back to that.

So I went to that appointment in December and they did a ton of tests, which I thought was a good sign. The tech who did most of them was very nice and explained things very well. Afterwards I saw the Dr and he did some more tests himself. He had very poor communication and didn't really explain anything. He prescribed me blood serum tears, and ivermectin cream. I was so overwhelmed with all the tests and everything that when I got home, I realized he didn't tell me what the diagnosis was. So I called and left a message and the next day one of his assistants called to explain things to me. I was diagnosed with MGD, demodex, tear film instability and corneal neuralgia. I asked if he thought I was having RCE and his assistant said no, there was nothing in the notes to indicate that.

So I have been taking the serum drops and ivermectin as prescribed and had my follow up last week. My symptoms have remained the same. I keep getting those episodes of severe pain in the night that wakes me up, or sometimes upon waking. They didn't repeat most of the test, just an exam with dyes by the Dr. Once again very poor communication, but now he wants me to start taking flebogamma drops as well. The assistant said its for inflammation since I can't use steroids because of my eye pressure. Sure enough thought when I get home and look at the notes it says the 2 stain tests they did were mild and moderate. The corneal staining is indicative of RCE, which last time said I didn't have. And for some reason they did not talk to me about that.

So at this point I'm doubting anything this doctor says and idk if I should continue his expensive treatment plan if he doesn't know what he is doing. His treatment isn't working anyways and I don't feel better at all and he claims those 2 drops are the only treatments that will possibly work. It's so hard to find other dry eye specialists. From what I read online, there are only a handful in the country. The one I've been seeing, Dr. Hamrah, Dr. Toyos and a few others.

Has anyone had similar symptoms? Is it true that those 2 drops are the only possible treatment options?