Ocular rosacea- Literally on ocular surface?

[socratese]

Was just talking to my doc about how the eye secretions get better but the eye pain does not always correlate with the secretion improvement. He noticed the same thing.

thought just popped in my head... Could ocular rosacea or whatever you have get on the eye surface and not just the eyelid? Perhaps, this would explain why there is still pain after the secretions are better?

The ocular surface is different. It will, of course, react differently to a chronic disease.

[Lfarls]

In my case I believe the inflammation is the root cause of all my problems, and even If i get the secretions better I'll be back at square one if I dont get the inflammation under control. I was in a clinical trial for DES and had to see the opth every week, every week he would note conjuctival hypermia. Having my third IPL treatment 3/23..hopefully I'll see some decrease in the inflammation.

[socratese]

going to update this thread. i started it before I saw dr rosenthal in boston and found out that my suspicions about something wrong with the surface of the eye was right.

after going to boston foundation for sight. I have a new diagnosis and idea of a root cause. I think my root cause and perhaps many others as well, is neuropathy in the corneal nerves and as a result hypersensitivity and chronic pain. degredation of the corneal nerves also is the cause of my MGD. they are connected.

[sandra lee]

I was just informed Friday that my Ocular Rosacea(which I thought was in my lids) is on the surface of my eyes and am on my way to the Wilmer Eye Institute at John Hopkins in Baltimore in June to see if there is anything they can do to help me.I'm on my 5th Opthamologist and they haven't a clue how to treat me.If there is anyone on this forum who has been able to get their ocular rosacea under control I would surely like to PM them.Good Luck to All!!!

[johannasas]

Hi Sandra,
I actually wrote about my visit with dr. Latkany a few days ago. He diagnosed me with ocular roseacea on the surface of my eyes. He is sending me for allergy testing, and recommended I use ice packs on my eyes for 1 minute 4 times a day. I stopped using the restasis, and am finding a hardly need to use eyedrops. Mind you, I have been living in new Mexico for 3 years, and my dry eye woes started there. I'm in ny now, and will see Dr latkany again in a few weeks. He said he will probably prescribe an antibiotic.
Good luck in Baltimore. Please let me know how it goes.
Johanna

[Angela]

Hi Sandra,
I actually wrote about my visit with dr. Latkany a few days ago. He diagnosed me with ocular roseacea on the surface of my eyes. He is sending me for allergy testing, and recommended I use ice packs on my eyes for 1 minute 4 times a day. I stopped using the restasis, and am finding a hardly need to use eyedrops. Mind you, I have been living in new Mexico for 3 years, and my dry eye woes started there. I'm in ny now, and will see Dr latkany again in a few weeks. He said he will probably prescribe an antibiotic.
Good luck in Baltimore. Please let me know how it goes.
Johanna

Okay I certainly don't want to down talk ANY of Dr. Latkany's advice, but I've found that he's given that same EXACT advice to several people that have seen him. He told me to use the ice packs 1 to 4 times a day and to go for allergy testing. He gave that advice to someone else here and she's had the same issues for 2 years. It seems like it's really hard for a lot of doctors to know what is CAUSING the inflammation. They know you have the dry eye, MGD, blepharitis, occular rosacea, etc., but they don't necessarily know what is triggering it. Allergies is an obvious guess and I don't disagree that is can be a possible cause or contributor, but if you don't have allergies, then they really can't figure out what is the cause. They can suggest all of the normal treatments to try and make you more comfortable, but how many of them are actually getting to the bottom of what caused it? I've spent thousands and thousands on doctors and things have only progressed. I know that I seem hopeless but surely there has to be an underlying cause, for a lot of people that cause is Lasik..but it IS a cause. I refuse to believe that you can develop these conditions for no reason. I believe that pain and swelling is a way of telling you that there is something wrong inside. I plan on going to another GP and demanding blood tests for literally everything.


I again want to say that I am not at all trying to complain about Dr. Latkany, my experience with him was very good, he is VERY nice and has great bedside manner. I am just saying that when it comes down to it, eye doctors can tell you what they see upon examining you, but finding out WHY you have those symptoms or that disease seems to be where they are just as clueless as we are. I'm sorry if I'm coming off as a negative brat, I truly hope that Dr. Latkany helps you get to the bottom of your problems.

[sandra lee]

Hi Johanna,
Dr. Latkany diagnosed me with ocular rosacea back in 2009 and I think he is the most knowledable Dr. I have ever met and his being too far for me to travel on a regular basis is why I am having such difficulty getting proper treatment.
He actually was the first Dr to tell me to discontinue the heat(which was excruciating but every doc I seen insisted I use warm compresses(one moron told me I wasn't using them HOT enough)which was of amazing comfort to my poor eyes!!!!
I hope he helps you and I feel you are in good hands.Best of Luck~~ Sandy


Hi Angela,
I think you are on the right track of trying to get to the cause of the problem and if you were to read Dr. Latkany's book you would learn that he too feels that to be true.
He told me to go home and do my homework and start with an Allergist and keep looking.I started with the Allergist (not allergic to anything environmental),then Rheumatologist,Hematologist,Dermatologist and am currently targeting hormonal.
You need to keep looking and researching and if a Dr doesn't seem interested in helping ,find another.Best of Luck to you!! Sandy