Can eye docs truly tell the difference between severe dry eye and other eye disease?

[poppy]

I have often tried to politely express to my eye docs my concern that my primary problem is not in fact any flavour of "dry eye" but some other disease. I am particularly concerned that I have a problem inside of my eyes, eg inflammation. I do have I think legitimate and reasonable reasons for this which I won't go into but when I try to bring this up with eye docs it usually goes something like this:

Me: Are you sure there is no inflammation inside of my eye (meaning inflammation beyond keratitis and conjunctivitis which is obvious and undisputed)

Doctor: Makes scoffing noise, waves hand in air and says "You don't have uveitis, just some severe dry eye, it won't affect your vision".

The ophthalmologists have never done anything beyond a usually extremely brief glance at my eye. On occasion they have used the yellow dye. They have never done a dilated eye exam or any other form of test except for a schirmer test. They appear to be completely deaf to anything I say that would clearly indicate to a doctor the possibility of a problem beyond "dry eye" and they are completely fixated on the diagnosis of "dry eye/bleph" given by an eye doc several years ago after they diagnosed a corneal ulcer based on an extremely brief external eye exam without use of any dyes.

I want to know whether it is actually possible for an eye doc to rule out inflammation inside of the eye based on the examinations they have actually done. I strongly suspect they cannot. Please do not make patronising remarks about how it is "unlikely", what I have asked these docs is that I have legitimate concerns about a problem inside of my eye, and they have claimed that I absolutely do not have a problem and I am doubting that they can possibly know this beyond reasonable doubt given their failure to actually investigate my concerns. Docs your feedback would be appreciated. Thanks

[Hopeful2]

Hi poppy,

I have had similar conversations with my eye doctor. I had written down a list of potential eye problems that could be mistaken for dry eye. At least my doc gave me a little bit of reasoning behind why I could not have any of the diseases listed. Now I would just like to know if my MGD is bacterial based, hormonal, demodex, or inflammation from aqueous defficiency. I think the treatment should vary depending on the cause or the way it presents itself.

I do have an increasing sense that the doctors just don't know how to differentiate between various forms of MGD and that they throw all treatments at the disease: lid scrubs, warm compress, expression, fish oils, doxy, steroid drops, restasis, zithromax. But what if warm compresses make eyes feel worse? Maybe there is more to the MGD than meets the eye.

[chattabob]

Grrrrr These eye doctors wind me up so much! Yet another one picking bleph as a cause... they seriously do not listen at all to any background information, just not interestes! And worst of all the ones I have seen I can see on there faces they are out of their deph.... but hey just picking bleph is a good way to clear someone out of their office... Grrr so mad with them

[littlemermaid]

Chatta: Blepharitis doesn't mean anything though, does it, except 'something wrong with the eyelids causing dysfunction'. The question is why have you got it and why is it so persistent. So yeh, you've got blepharitis, but WHY. It's a rare ophth with any interest or knowledge in systemic causes, or even sinuses or allergy.

I would also think they'll be clueless about where to refer for the causes, and so will the GP once it gets specialised although yours sounds helpful, and you're better off reading up off the internet as to differential diagnosis, and thinking about possible causes yourself, and doc-shopping through NHS Choose & Book. Don't give in.

(Look what Ygwair had to go through to finally get diagnosis. She trailed round state-of-the-art ophth and derm who noticed symptoms of systemic causes but didn't know what they were.)

The fact that you're tired but you get plenty hours is odd, unless your sleep is disrupted by eg apnea because of blocked sinuses. Any progress from the sleep clinic? Have you de-allergied your rooms? I'm wondering whether working in the spice factory set you up for sinus allergies like dust-mite (this happened to me after cleaning an old library, the dust + microscopic wildlife were prehistoric). Any chance of testing?

This is a good starter site to think about eyelid oedema. I know it seems simple but this site helps me a lot on re-thinks, esp the animated student notes. http://www.goodhope.org.uk/departments/eyedept/

[Lacrima]

Hi Poppy,


Sorry I can't really help with your question, but I wanted to reply because I totally understand your frustration- It is hard when you feel you've arrived at a dead end with a particular opthalmologist.

Unfortunately, when a non dry eye specialist can see that your overall eye health, beyond the dry eye, is not at risk, they will often not go further with their investigation. Many just don't have enough medical knowledge to deal with dry eye.

After months of going to different doctors, I have decided to spend extra money and time and go to a dry eye specialist. My appointment is next Friday. Although I do not want to raise my expectations too high (I am not hoping for any miracle solution) I at least feel that this person will have enough knowledge and experience (and hopefully up-to-date tests) not to overlook a condition if it is there. Even if the specialist tells me there is nothing else I can do- I will feel more confident that I have been assessed thoroughly.

Maybe a dry eye specialist would be able to help you with your inflammation problems. They might not have the answer immediately but at least they wouldn't brush your questions aside as though they were trivial... Your doctor sounds a lot like my most recent one, who asked me 'which eye was it again?' before putting in a punctal plug.

It may be worth for you to see a rheumatologist and rule out any auto-immune diseases which are associated with dry eye, as well as thyroid levels.


Good luck and hope you get more helpful attention soon.

[MaryVa61]

Poppy,

I understand your frustration! Early last year, and a couple of years before, I was so frustrated because I was unable to get across to the eye docs how severe my eye pain was. They'd just say my DES was pretty typical, not THAT bad, and that there was no other problem (besides Glaucoma) and wanted to just focus on glaucoma treatment while I was in unbearable pain that they ignored. I even consulted a different ophth who referred me to a corneal specialist, but had little more help or understanding from them regarding severe symptoms that didn't fit what they were telling me. I wondered if I had some other eye disorder they were overlooking too.

I had to search for answers elsewhere, with several other specialists, to finally get answers. So many conditions can cause dry eyes and other eye problems, so I searched for the underlying diagnosis outside of Ophthalmology, rather than continuing to try to get a more specific diagnosis for my eyes from the eye doc, and I had success with a dermatologist. It do still think it's ridiculous that the specialty that deals with the primary symptom (severe eye pain) was of no use in getting a diagnosis, proper treatment or referral to another specialty. I don't understand that. Good luck to you.

[Rebecca Petris]

Poppy,

I have often tried to politely express to my eye docs my concern that my primary problem is not in fact any flavour of "dry eye" but some other disease. I am particularly concerned that I have a problem inside of my eyes, eg inflammation.

Personally I would trust any really well trained intelligent ophthalmologist to give me an accurate answer on THAT question much more than I'd be likely to trust them on questions relating to dry eye disease itself. Eye docs like things that are objective and that they can see and quantify. Stuff about pain and discomfort (when there is not enough corresponding visual evidence) is much harder for them to relate to or respond to with understanding, and not helped by the absence of any really good medical literature on the topic. Speaking of which those of you who are technically inclined will want to see Dr. Rosenthal's recent article in the January issue of The Ocular Surface. Very very interesting stuff and it should be a real help to getting more dialogue going about corneal pain.

Sometimes the questions we put to the docs aren't as clear to them as they might seem to us when we're asking them. I think there's really two pieces here,
(1) is there something going on elsewhere in the eye (and in that case, you're much more likely than not to get an accurate answer - e.g. your doc's answer about uveitis etc, which is exactly the kind of thing they'll think of) and
(2) what's my etiology (I'm not talking differential diagnosis here as in what type of mgd do I have if any, but BIG picture cause, whether originating in the eye or elsewhere, whether affecting any other part of the eye or not). Not very many doctors are equipped to even consider this, except for the most common systemic causes such as auto-immune, connective tissue diseases and such.

It's helpful to have a doctor who understands what you're getting at and has no hesitation in saying "I don't know" when that's the case.

[poppy]

Poppy,



Personally I would trust any really well trained intelligent ophthalmologist to give me an accurate answer on THAT question much more than I'd be likely to trust them on questions relating to dry eye disease itself. Eye docs like things that are objective and that they can see and quantify. Stuff about pain and discomfort (when there is not enough corresponding visual evidence) is much harder for them to relate to or respond to with understanding, and not helped by the absence of any really good medical literature on the topic.

Well I used to think that I should be able to trust an ophthalmologist on questions like this but the longer I have this the less I trust them for a number of reasons.

Firstly, if doctors cannot tell the difference between different types of dry eye how can they tell the difference between dry eye and other eye diseases. I'm talking about clinically severe "dry eye" (which I have) which I believe would be most difficult to tell apart from other eye diseases. Docs always appreciate that I would be having severe symptoms, they just refuse to consider the fact that it could be something other than "dry eye". This leaves me completely stuck at this point, with uncontrollable inflammation that isn't getting diagnosed because they refuse to consider posibilities outside of the standard "dry eye" set of diseases. They just act all surprised that steroids aren't working very well, shrug their shoulders still insist that it's dry eye and send me on my way with more steroids.

Take this post for example, proof that most ophthalmologists cannot tell the difference between scleritis and conjunctivitis until it is so obvious that the patient could diagnose it themselves using just a mirror.http://www.dryeyezone.com/talk/showt...t-Please-read!

I also believe the following are facts:

A doctor cannot possibly diagnose a corneal ulcer as "dry eye/bleph" with any certainity when they haven't even used dye to stain it or taken a swab or done anything except a one second glance at the surface of the eye. Yet this is exactly what happened to me on my first visit to an eye doc and the dry eye diagnosis has completely stuck. Dry eye isn't even the most common cause of corneal ulcer and therefore it is quite likely the doctor was wrong.

I also believe it be a fact that a doctor cannot rule out inflammation inside the eye without actually looking inside the eye (ie they can't tell just by looking at the surface). To look inside the eye properly requires dilating eye drops. The docs have never done this and yet they still tell me I don't have any problem inside the eyes, even though they can't possibly know this for a fact.

Basically, I think eye docs are taking patients and the general public for a ride when they try to make us believe that they can diagnose eye disease.

[Lacrima]

So many conditions can cause dry eyes and other eye problems, so I searched for the underlying diagnosis outside of Ophthalmology, rather than continuing to try to get a more specific diagnosis for my eyes from the eye doc, and I had success with a dermatologist.

Hi Mary,

What did the dermatologist find in your case?

[irish eyes]

Hi Poppy

".....I also believe it be a fact that a doctor cannot rule out inflammation inside the eye without actually looking inside the eye (ie they can't tell just by looking at the surface). To look inside the eye properly requires dilating eye drops. The docs have never done this and yet they still tell me I don't have any problem inside the eyes, even though they can't possibly know this for a fact....

Doctors can see inside the back of the eyes when they perform routine eye examinations but dilating drops mean they can do a more thorough investigation. I have had this done on numerous occasions because of bouts of severe iritis - inflammation of the iris. Doctors need to know the extent of the flare up - appearance of cells etc.

(Dilating drops also provide comfort and pain relief by paralysing the eye muscles).

Any optician examining my eyes can seen the `scars' from iritis, even though they don't use dilating drops.

As these drops cause blurred vision (i.e. for up to 6 hours) then you would need to be prepared for that and you couldn't really drive if both eyes were treated. I think it would be highly unusual for something like iritis to affect both eyes at the same time so the doctors are probably ruling that out. The pain inside the eye is significantly different in nature to the pain on the surface..

[poppy]

The pain inside the eye is significantly different in nature to the pain on the surface..

Yes I get different pain like that. My eyeballs get deep aching pains and parts of my head hurt along with brutal photophobia every time I try to reduce my steroid drops. I tell the docs this and it's like I hadn't spoken at all... it's kind of like trying to have a conversation with my husband when he's watching the final minutes of a particularly exciting football match with his favourite team... you are totally ignored and it's clear you are really annoying them. The docs also ignore me when I complain of very severe and ever worsening floaters... they just refuse to check them out even briefly, like everyone my age is walking around with two eyeballs filled with thousands and thousands of floaters. Reduced/poor vision is also dismissed as being purely from dry eye - it could be but surely it is their job to check things out properly.

I feel like there is absolutely no point opening my mouth in front of an eye doc. Their entire opinion is based on their colleagues previous diagnosis and a one second glance at your eyes. Talking only makes them angry.

[MaryVa61]

Lacrima,

The derm found that I have a type IV hypersensitivity to 2 preservatives, formaldehyde and quaternium-15 (formaldehyde-releasing), inflaming the inner eyelids mostly. Found it by doing TRUE tests for skin allergies. It affects my skin too but much milder than my eyes, so the derm would never have thought to even do the tests if they hadn't been suggested by my allergist. The biggest source of Q-15 and formaldehyde that was affecting my eyes was coming from my bedding, throw pillows on the sofa, shampoo, hair conditioner and body wash. That led me to try getting rid of BAK in everything also, since it's also a preservative and can cause problems for people. There wasn't a TRUE test for BAK though.

My chemical sensitivities and other eye problems are probably due to another disorder I have, which still hasn't been diagnosed. I'm to see a new specialist next week who I hope is going to be able to figure it out. It's thought to be a HDCT (Heritable Disorder of Connective Tissue), like Ehlers-Danlos Syndrome.

My eyes are still dry, but not nearly as bad as they used to be and with a lot less pain and almost no filaments or mucus strings.

Mary

What did the dermatologist find in your case?

[eyemech]

Amazing....
Can I just throw in a couple of facts. As the person looking at a patient I feel that perhaps I can shed a bit on the topic. An inflamed cornea can lead to an inflamed front chamber of the eye. This can be seen without dilation simply by observing the anterior chamber with the slit lamp. It can be sub-clinical.That means that in very rare cases the inflamation is so slight that the doctor does not see it on inspection. A really good look in a dark room is usually sufficient. Now, another way to diagnose a subclinical iritis is to shine a light in the other eye. If the contralateral eye hurts, it points to an inflamation that we do not see. A check of the intraocular pressure will also help in that the inflamed eye has a lower pressure than the other. This is because the inflamation affects the ciliary body. This is the structure responsible for the production of aqueous fluid. As for dry eye itself, I think many patients really have a neuropathy rather than true dry eye. I have come to this conclusion by testing several hundred patients with the tearLab and finding a good many normal osmolarity patients with horrible symptoms. Pain, not dryness is often the real culprit. One of these days we will quit automatically diagnosing dry eye without some sort of real test. Until then, Restasis and steroids,(or nonsteroids-such as Bromday) can help with the discomfort. I have been working with some hormone eye drops. Got some real success until one of you from this list called and asked if I could get them some. I did and she got no help. So, the patients on this list are a special group. They have a number of problems and some of my common ideas do not work. I just want you to know that a decent eye doctor can clearly see inflamation. Its not that hard. There is a deeper inflamation in the vitreous, but I have seldom seen it there without also being in the front. Anything is possible.
Hope this helps in some very small way.