Just diagnosed. Scared and feeling horrible!

[MLT]

Hi,
I was just recently diagnosed with moderate-severe dry eye. I have corneal erosions causing blurred vision. Using Muro 128 drops and Refresh Plus tears.
I am very scared. I found this website and hope I can get some advise from all who suffer with this. The scariest part of this is, I have stopped producing tears! When I cry, no tears run down my face anymore! I am seeing a corneal specialist this Friday. No doctors have an answer for me. They can't explain the no tears thing! I have been tested for Sjogrens Syndrome and that came back negative. Lupis, negative. However, my ANA test came back positive. Please, can anyone help me? I would like to know that I am not alone. I am so scared. It has been 3 weeks and I can't stand this anymore!
Is there any hope at all? The doctors don't have any answers for me right now.
Thank you for your time,
MLT

[Jeanne D]

Hi there.
I'm new to this bb myself but have had some erosions and I know the pain of them.

I don't have much advice about the no tears thing, but here are some things that have helped me to avoid or lessen the occurence of erosions.

I drink plenty of water to keep hydrated
I take Flaxseed oil pills and omega 3 fish oil, also because it lubricates
I use ointment before bed and wear a firm fitting sleep mask.

When you have erosions do you have them in the morning when you wake up?
If that is the case. the key seems to be to learn to open your eyes slowly.
I take off the mask and keep my eyes closed.
I place art. tears in the inner corners of my closed eyes, allowing them to become lubricated. I then wait a couple of minutes and keep my eyes still.
After that, I take my two fingers and gently pry open one eye at a time.
It has helped me to avoid erosions, or at least lessen them to a great degree.

I don't know if any of that helps and I know how scary all of this must be.
I admit sometimes I'm afraid to go to sleep , for fear of waking up with an erosion, but I try not to think ahead too much and try to relax.

Anyway, if you don't mind, I'll pray for you.. I'm a firm believer in prayer.

Take care and I hope you're able to get answers and relief from your symptoms.

((((hugs))))

Jeanne

[atta]

Ask a Rheumatologist

You certainly have some kind of autoimmune diease. And autoimmune diease may take long to show in test.
Ask your doctor to give you some oral medicine. And maybe you should check Candida, google for some information, there's a simple spit-test which can be done by oneself. Candida make dry eyes even dryer.

Go to this forum, there're a lot of discussions about sjögren and autoimmune disorder, undiagnosed or diagnosed.
www.sjogrensworld.org

[liz56]

Welcome

Hi, MLC.

I'm sorry to hear about your erosions. Jeanne D's advice is good.

Do you have a history of a corneal injury? When you talk to your corneal specialist, ask about "epithelial basement membrane dystrophy."

Dr. Holly's drops did wonders for me. It took a long time, and even though my eyes were fine during the daytime, I need to use the drops all day to get the healing effect.

Part of the reason that your eyes may not be producing tears may be having broken the sensory mechanism of the nerves of the cornea due to the erosions. I know that you are investigating other causes, and that is good, but when my eyes healed from the erosions, I found myself producing more tears.

Look around the site. Several of us suffer from erosions from various causes, so you will find a lot of discussions.

I'm sorry that this is happening to you. It really is frightening, but things can and do get better. I would not have believed that a year ago today, but eye drops during the day (Dwelle), Tranquileyes goggles, and Genteal Gel (at night) have helped me to feel normal again.

Best wishes to you,
Liz

[eva]

Hi Liz

Your story sounds familiar and mine has a happy ending so far.

Woke up one day with blurred vision and could not look outside on a cloudy day because daylight blinded me.

I thought I was going blind - never heard of dry eyes.

To make a long story short, the ophtomologist told me my corneas were extremely dry, gave me Maxidex for a week and told me to use drops along with it. Maxidex is a steroid and only for short term use.

It took 3 months to get my vision back to read the paper or a book but the day-light sensitivity was gone after a week or so. So the Maxidex helped to be less dry and inflamed.

I have been diagnosed with SS - the diagnosis was already in my doctor's office when all this happened but I forgot to phone and ask for the results
(I mentioned sensitivity to sunlight 6 months before, so I was tested for SS but the sensitivity went away so I forgot all about it.)

I test positive for Lupus for over 20 years - I seem to have the majority of the "markers" including ANA positive but never had a symptom so it's not something I even think about - my guess is that I was tested for SS at the mere mention of sunlight sensitivity because of the Lupus connection

Anyway, the point is that once you get your corneas under control and they won't be dry, you won't have blurred vision (at least that was the story for me) - the fact it took 3 months drove me crazy but I was assured things would be ok so I had no choice but wait "impatiently" -

Since the first diagnosis, I put drops, gels ( no preservatives) in my eye constantly and Lacrilube at night. I used Restasis for over a year, it helped the first few days (it supposed to take a month before you notice a difference but for me it was 3 days) - after a year I decided it wasn't doing much anymore and I took myself off it a couple of months ago. So far I don't miss it. If I do, I will go back on it.

I really think you will get better but once you do, the trick in my opinion is to "never let your eyes get dry" - I am like a mad woman looking at my watch and make sure I put drops (Bion Tear) or Genteal Gel (preservative free one) at least once an hour.

I don't feel dry eyes (insensitive corneas- go figure) so I rely on my watch.

Adding insult to injury, my eyes decide to be sensitive during the night (why not during the day I ask them) so I wake up once around 3-4 a.m. to put more Lacrilube in.

Good luck

eva

[liz56]

Eva,

You are so right about other problems and how easy it is to forget things once they stop bothering. I have a hypothyroid condition, and there are so many things associated with it that it is hard to keep them all straight. I wonder if I have Hashimoto's disease, as the problems come and go. I'm seeing an endocrinologist every four to six months and slowly working at it. Since starting synthroid on 2/29/08, my dry eye symptoms have improved.

My experience with restasis is like yours. It helped right away, and I know that it helped a little off and on with tearing. However, after almost a year, I cannot say that I am all that impressed with it.

Glad to hear that you are keeping things under control. I know that you've been here for a while. Have you tried Dwelle?

Best,
Liz

[eva]

Hi Liz

You have a lot do deal with.

When it came to Lupus- I could have been a nervous wreck for over 20 years for nothing - I refuse to worry about things until I have symptoms.
According to the Lupus specialist there are thousands of people walking around with my pathetic blood picture and their doctors did not refer them to a specialist for a low white blood count (that's how those Lupus markers were found) so they go through life not even knowing about their positive blood work.

I happen to be one of those people who hate drugs but will take them if I must. I have a prescription for Solagen - sitting in the drawer - "in case I need them"

I feel I have everything under cvontrol with over the counter drops/gel/and whatever Lacrilube is called (vaseline?)

So, no I have not tried Dwelle. Don't want to try anything new thinking that when things are ok, why change?

I am going into a Maxidex study for a 2 week period starting maybe July -

I noticed you were on Restasis. It is supposed to be a "life time commitment" - I decided it won't be unless my eyes get worse.

I am not saying things are wonderful, but they are wonderful compared to some of the stories I read on this website. Some days I worry (for a few minutes) that what if SS gets worse for me? - The I tell myself I could be hit by a truck today and get killed so there is no point worrying about the unknown.

What I will not do is forget the constant moisture application for my eyes - I won't give them the chance to get dry. There is not much more I can do.

I am really glad to hear your eyes are improving - hope they will be 100%
soon.

BTW, I live in Toronto and Canada does not allow drug advertising the way the US does. However, most of our TV channels come from the US

I consider drug commercials from the US funny in a sad pathetic way. First you see all the positives with someone smiling and happy - then in the back ground you hear a low voice with all the possible side effects. So I don't know how it affects other people but all I hear is " stay away from drugs unless you must take them" When i got the Solagen and read the possible side effect, I decided I'll hold off - if I felt life was a misery and I were suffering, I'll take them.

eva