Different diagnoses after three years

[Emerald]

Been trying to figure out this dry eye situation for my daughter, now 23, for over 3 years. She has been diagnosed with MGD, but is it??

Here's what we've tried so far: Every drop imaginable, over the counter and RX, warm compresses, humidifers, both cool and warm, tranquileyes, taping eyes shut, various eye masks, flaxseed oil daily and flaxseed capsules, theratears and other good quality fish oil, juicing, Many physicians including: Dr. Gagnon, Dr. Mandel (LipiFlow procedure), regular ophthalmologist and associates, UC Berkeley Dry Eye Clinic, Infectious Disease Doctor, Internist, Chinese Medicine, Flower Medicine, Indian Medicine and more...nothing has worked, so she was finally recommended for PROSE.
UCSF has recently opened a clinic, so the two hour consultation was yesterday.
The initial fitting did not go well -- when they were inserted, she couldn't see well, everything was wavy like under the water. When they were taken out, her eyes felt better, less dry without the PROSE..go figure. She is one of three that they haven't worked for at UCSF.

So...the director at that particular clinic came into the examining room between appointments and did a couple of quick tests and said to stop doing all these treatments that weren't helping. He said if it was MGD that one of these treatments should have provided some relief...

He tested cornea nerves and now it appears that the problem isn't MGD, but something within the nerves of the cornea and the sensitivity (sounds somewhat like what can happen after Lasik, but she has never had that. (She has farsightedness and astigmatism and has worn glasses since age 2, occasionally contacts, which has been almost nil since this problem)

So..here we are back at the drawing board - he will consult with another physician and plans to get back to her next week.

They will probably start a new treatment with some kind of drops (my guess is a steroid drop, but not sure and some kind of antibiotic i think)

This problem seemed to start after using several different antibiotics for a uti three years ago, but that's just a guess and doctors say that isn't why.

Has anyone heard of this corneal nerve thing happening for no apparent reason?
What treatment can help?
Is this the proper diagnosis? (who knows...)

[Katewest]

Are you going to continue with the Prose lenses? Maybe you have to wait for the right fitting ?

[Emerald]

Unfortunately the doctors there said PROSE wouldn't work since her eyes felt better after they were removed, which is what made them do additional corneal tests. They tried all fittings that could possibly work, and none felt comfortable, and she could not see without everything looking wavy. ughhh

[spmcc]

Hello Emerald,

You didn't mention trying autologous serum eyedrops. There have been posts about Dr. Hamrah's research on autologous serum drops for nerve problems. You could search DEZ using the term "Hamrah". Here is one thread, but there are others: http://www.dryeyezone.com/talk/showt...ghlight=Hamrah

I don't know if it's useful to you, but I thought I would mention it as an option to ask about.

NOTE: I do not use autologous serum drops. I tried them many years ago (100%) and I didn't find they helped me.

Good luck,
Sheila

[Emerald]

Thanks, probably should also ask about those drops.
This is so overwhelming, even after three years.

[Katewest]

have you tried diet changes? i think that if i could seriously cut out sugar/dairy/carbs i might be a lot better. I have MGD due to rosacea. but then again, who know b/c there isn't really a test. all i know for sure is that my eyes burn and are red. the oils have been coming out better since i started the Latkany expression though.

[Emerald]

Yep, have tried diet changes, limiting carbs, juicing, really fresh food, lots of water, exercising.

Sheila, the autologous serum drops didn't work at all for you? If they help the nerve tissue, might be worth trying, although I already know that drawing that large amount of blood won't be easy, as she is a very small build and gets lightheaded with those kinds of things.

Might try a combo of steroid drop and doxy next.

[hannidan]

I'm a long way from being an expert on any of this but you might try Googling everything (and I do mean everything) in your daughters environment. Like "your daughters symptom and the antibiotics she took" or "you daughters symptoms and cotton sheets" or "the symptoms and green beans". Yes, I'm being ridiculous but be thorough, it's free. I developed post Lasik dry eye problems and after 2 years 9 months and seven eye doctors I sat down and Googled "dry eye and one of the medicines I was taking" Bingo. Funny how not one of the eye doctors could be troubled to check my listed medications. Back to your daughter, perhaps some allergy testing? There are two easy to read dry eye books, also. One by Dr. Latkany and the other by Dr. ******. Perhaps they would open up some other areas of research for you.

[NotADryEye]

I had incredible, unbearable pain. At one point I was diagnosed with occular neuropathy and put on Lyrica. The Lyrica helped the pain, but I did not tolerate it well and did not like the overall sensation. I couldn't tell where my body ended so it was difficult to walk up and down stairs and hold things. I also couldn't feel temperatures in my mouth. I burned myself and didn't know it.

When I finally found Dr. ******, he diagnosed conjunctivochalasis among other numerous co-morbidities. He performed posterior and anterior amniotic membrane translplantation (AMT) surgery in both eyes. Although we are still resolving some issues, I no longer have pain.

For some reason chalasis is frequently missed or misdiagnosed. You might ask about it.

[Guest]

I know you mentioned dietary changes, but has she tried anything drastic?

ex. an elimination diet where she spends the first month completely avoiding the most common food allergens (ex. no wheat, no dairy, no eggs, no fish, no nuts etc). Plus, avoiding sugar and alcohol.

I know that must sound like she'd have nothing to eat during that time, but trust me, it's doable, and the results can be most useful.

In my case, I realized that wheat is my problem - when I don't eat wheat, my meibomian glands look normal - I would never have figured this out if it weren't for an elimination diet.

Of course, perhaps she doesn't have any food intolerances and the elimination diet will be a waste of effort - but it sounds like you guys have tried everything, so maybe it would be worth doing just in case it yields results?

[Katewest]

Emerald- I had the confocual micro. test done at Boston Mass Eye and Ear because like your daughter the PRose lenses didnt help me. The weird thing is I've never had Lasik either but for some reason the test suggested my nerves were damaged. I have been trying serum tears for the last 3 weeks.