Eye disease diagnose suggestions needed, local docs out of ideas?

Question

Until december last year the eye had 6 diopters steady, clear focus, no pain, etc.

In december the eye got a night corneal errosion (notable pain, burning sensation), diagnosed and treated by doctors in the following days.

However, along with that, a pain started inside and around the eye , seemingly alongside the trigeminal nerve It is a dull, permanent pain, related to and seemingly affected by light; it would go away at night and it would return at the first sense of light (even with closed eye!) and increase throughout the day.
Vision was slightly worse, as when your eye is tired, but overall acceptable.
That pain is still here - daily amd, recently, throughout the night as well; it's like an overstretched muscule.

Since about July the vision got drasticly worse: object edges are now out of foucs, each with a few "aureas". Increasing diopter/angle does not help. Only closing the lense size (looking through small hole) does.

Local university docs can't help.
Can you?

It does not seem to be an RP, at least based on what I read about RP; I certainly do not have black spots (tested several times), can see my fingers moving in the mentioned test etc.
What I had meant mentioning "holes" was that I can see MUCH crisper through a small hole in front of my eye. THe more light in, the more distorted the image gets. Local profesors claim cornea seems all right.

I have quit work and am now actively working for a solution. Please tell me about possible places within USA where I can call or go - I can afford it.

So far my experience with doctors have been widely negative, though, varying from kind rejection to brutal "go to this and that guy instead, he has time for cases like yours".

Plus, it seems all of them can't think outside of the several symptoms/diseases they're used to seeing on a daily basis.

Is there a place where they actually LOOK for the cause instead of trying various treatmens in order?

Doesn't seem to be trigeminal neuralgia either, as the pain is pretty much constant and dull, it makes me massage my face around the eyes and down to the chin. It is becoming irritating mostly because it's strong enough to prevent me from focusing on anything requiring mild brain activity, but I can overcome it for both sleeping and active brain activity (e.g. solving seriously interesting or pressing problem).
No, it's not TN as described popularily.
But I can say that some TN pills do help with the pain, e.g. tetragel. They do not eliminate it completely, though, nor do they address the vision loss.

Answer 1

Check out this website and see if you feels this if it describes your symptoms

http://en.wikipedia.org/wiki/Trigeminal_neuralgia

With the erosions, it occurs to me that you may be having shingles (herpes) outbreak along the V1 pathway, or that the periorbital muscle dysfunction has allowed your eyelid to stay open during the night, leading to erosion.

Answer 2

Well if you're not much of a talker it could be hard to get an open line going between the two of you. I would suggest setting aside a time of day that the two of you can sit down at the table and talk without a TV or something on for a distraction. It isn't important what you talk about just establishing a dialog will help get things going. Good luck Frosty! :)

Answer 3

I don't know where you live, but if you can get to a good surgeon optimists he/she should be able to find out what is wrong. If you live near Massachusetts Eye and Ear Infirmary in Boston you should try to get an appointment there. Otherwise go to www.docboard. com and look up your state. If you live in another country I do not know what to tell you except to find a good doctor.

Answer 4

sorry i dont really have suggestion or idea of diagnosis, but see if there is an eye institute in your area, instead of university docs, they may have a better idea of further tests, or may have experienced this in the past, good luck on finding out whats wrong and hopefully fixing or stopping further progession

Answer 5

a typical retinitis pigmentosa. have they checked you for it?
it is a disease where the retinas deteriorate and become super sensitive to light. docs don't know what causes it or how to treat (in the former soviet republic.....whatever it used to be called , i know used to (don't know if they still do) do thc injections to help stop the deterioration)

do this test and tell your optician about the results:
stand straight up. hold your arms out to your sides while looking forward. wiggle your fingers. do you see them or are they out of sight?
with my r.p. i have to move my arms in to about a 45 degree from the sides to see my fingers. then a blind spot, then i can see again.

r.p. is HARD to diagnose. i had to be seen by 7 or 8 different docs to be 'deemed' r.p. . i went thru testing like you would not believe (and some of the tests were PAINFUL) for 6 months. went to richmond and d.c. twice in one day. (richmond to d.c. to richmond to d.c. to home)

or it could be something totally different. like you are starting to see life in a new way (with the auras). you could be going thru a life/spiritual awakening.