Hi everyone, first post! DED MGD Unexplained limbal staining

[scoelicolor]

Hi Everyone!

I ended up here after I suffered for years from mild DES without ever doing much about it or knowing why my eyes were so uncomfortable, I figured it was fatigue and normal discomfort. My original optometrist didn't take me seriously and advised me to keep using my BAC preservative containing drops and did not look at the surface of my eyes or make any suggestions about DES whatsoever.

Last May it became severe and I could not ignore my symptoms, I started seeing a new optometrist who put in temporary punctals, changed my eye drop to Refesh Optive Advanced PF, and checked my tear break up time which was around 2 seconds! She started me on FML but my pressure spiked to 27. She had me stop cold turkey. The punctal didn't fit correctly in my left eye and began to come out and stabbed my sclera every time I blinked and I couldn't take it anymore. I went to the hospital to have them removed. The MD on there was too afraid to take them out but looked at my eyes with stains and said both eyes were largely decimated. He referred me to a corneal specialist for the next morning and sent me home in agony after waiting hours to see him. I was crushed and afraid, and felt I could not get help.

That is when I started doing my own research, I realized I needed to learn more because having eye problems was terrifying and there was a world of jargon I didn't understand. I did some google searches over the past year and kept ending up here seeing that there were people who experienced the same things as me and tried the same things. This site helped me talk to my doctors and know what they would recommend/prescribe before they even mentioned it! This helps take away a lot of fear and uncertainty, Thank you all who posted!

So much has happened since then, and I have been on this long bumpy road of severe symptoms that have been disabling for almost a year now before coming to terms with the fact that this won't simply go away for me. I decided to join DEZ so I can contribute back since I got so much from you all. I am so glad this community exists and that I can share my experiences with other people like me. I have had moments of feeling truly hopeless and your posts have helped me through. I hope I can help people and would love to make connections with other dry eye sufferers. As supportive as my friends and family have been, they cannot fully understand the severity of this disease (and I'm glad they don't I truly can describe it as disabling and disruptive of every aspect of my daily life).

Currently I have no real diagnosis, just "dry eye disease: bilateral tear film insufficiency, mild memboian gland dysfunction, unusual/unexplained staining that shows advanced stage dry eye." They don't know what started it, and a couple months ago my eye specialist tried to tell me I was "all better" without using the usual stains to check (since then I have learned more about stains). At my most recent appointment for pain and severe swelling, he used lissamine green and and saw that I had unexplained limbal staining, also redness of lid margins and tear break up time of ~4 seconds. I wasn't better. I've been on oral doxy and my IOP is back up to 22.5 and 22 from my usual 17. ANA-reflex was negative, it's not my thyroid. He seems to be at a loss with me and I am looking for another ophthalmologist for a second opinion as I don't know what else to do. I could go on for hours and have tried so many things. If you want to know more, if you experienced similar things please respond to this post or feel free to PM me or ask questions!

I am in my late 20's, I'm a biologist/chemist who does non-industry drug discovery searching for life saving anticancer/antibiotic drugs. I am use to reading journal papers and read one on BAC and am highly against it being used, ever! I am also interested in the lack of FDA approval of the eye drops that our doctors tell us to put in our eyes every 3 hours, for the rest of our lives! How can a disease that is treated by a specialist have treatment that consists 80% by OTC products that we put directly into a sensitive organ such as the eye? How is this disease managed without clinical testing of products like artificial tears and their long term affects? Anyone know about the lack of regulation? I hope I am missing something, because it seems this is not treated as a legitimate disease and a lot of my prescriptions have not been covered like Lotamax gel, Xiidra and not to mention the hot compresses, etc. costing me an arm and a leg. Also, seems strange eye doctors are not available on call on short notice even in a hospital setting like I experienced. Love to hear your thoughts; Sorry for the long post!

[pythonidler]

Welcome to the forum, and thanks for participating in my dry eye survey.

Sorry to hear about the trouble you're going through. It's a long dark tunnel but I promise you there's an end to it.

Even though it sounds like you're a dry eye veteran, I'd still direct you to a long post I recently wrote, called "What you need to know about computer-induced dry eye" (link is in my signature). I'd point you to three sections right now: "Lessons Learned," "Looking For a Doctor," and "At the Doctor's Office." A lot of it you may be familiar with right now, but you may learn a few new things from it.

A few pieces of advice:
1. Right now the most important thing you can do is to seek out several second opinions. I'm not sure if you live near a big city or not, but generally there are more competent doctors the larger the city you live in.
2. Strongly consider quitting your job now before your eyes become even worse. I promise you nothing good can come of staying at your job and continuing to make your eyes worse. Your quality of life and medical bills will both be worse off should you choose to stay in your current job.
3. I don't know what your current routine is, but at the very least I would start taking omega-3 supplements and start using a warm compress, if you're not already. The omega-3s I recommend are Nordic Naturals Ultimate Omega, PRN Dry Eye Benefits, and HydroEye.
4. If you have staining with lissamine green, there's a good chance you are also aqueous deficient. You can do a quick check in the mirror to get a rough idea if you are - the procedure to do so is described in the article, in the "At the Doctor's Office" section under "Tests for Aqueous Deficiency".
5. Realize there are still lots of things you haven't tried. You can read about all the treatments available in the article.

[scoelicolor]

Thanks for taking the time to post! Your links are SO helpful.

I just printed out the diagnostic checklist to bring with me to my next appointment. I had no idea I was being shortchanged when it came to testing/diagnosis for DES. Considering the number of times I have been to see my doctor I feel like I should have more answers by now. I have only had: the vision test, pressure check (not every visit despite history of elevated IOP), stains (not every visit), and tBUT (not every visit).

I have 20/15 vision when tested, but have all kinds of vision issues/ blurring upon blinking, eye movement etc. that they are aware of. I think if my vision test were worse they would take me more seriously. I guess I assumed I was in good hands because my ophthalmologist has great credentials and decades of experience, and he seems knowledgeable but also rushes through appointments. I have suggested to my current dr that my job may be contributing to my problems and working with hazardous chemicals day in and day out could be causing issues, but he is not concerned about the fumes etc. and thinks it has nothing to do with that because other people at work don't have the same symptoms as me as far as I know (I should also mention that I am ALWAYS wearing eye protection, even when others do not). One way or another I won't be able to keep working there if things don't improve drastically by the end of the month. I have already talked to my boss about my health problems and about how I will need to work less due to appointments and needing to rest/pain etc.

I currently have a raised patch on my right eye's sclera and my on call dr wants me to do hot compresses and massage at LEAST 4x a day and ignore the intense pain because it's "normal" and said I should schedule an appointment if it keeps bothering me.To me it sounds like they don't hear me/aren't concerned about my worsening condition; And I only bother the on call them when I am desperate and in agony because I feel like they already see me as an annoyance and I don't want to be seen as someone who cries wolf.

I know compliance is #1 in their eyes and it's almost impossible to be this compliant while holding a 9-5 job and considering how much time I already put into my routine. So, your advice on leaving my job really makes sense and I am seriously considering it in the near future. If this disease was recognized as disabling I wouldn't hesitate so I could heal my eyes, but I also don't know how to afford quitting even for a short amount of time without some kind of assistance because of high rent and school debt etc. It seems like a catch 22 for me at the moment. I am taking your advice about acting sooner rather than later and getting second opinions from other doctors and looking into other job options right away.

Most concerning to me is I have never worn a contact lens in my life and my dr keeps asking me if I wear them because of my unusual staining pattern, it is similar to someone with hypoxia from lack of oxygen from overuse of contact lenses. This is another reason I think chemical fumes may have something to do with my condition. Every time he looks at my eyes with stain he says "strange" or "odd", not exactly what I want to hear! Since, as you mentioned, this disease is progressive, I think it's really important someone check to see if I have atrophy and the other things you mentioned. It's time to get some real answers from diagnostic tests! Thanks for helping to empower me at my appointments

[pythonidler]

It's a tough situation you're in with school debt. You could always move in with your parents or relatives and live rent-free for a while, but the student debt part is hard. I'm lucky in that my parents paid for 100% of my college and are committed to covering my near-term medical expenses.

Regarding the doctors, I hope you can find someone who is halfway decent. If you see a lot of second opinions and haven't found "the one", you should consider going with the doctor who is most open to trying new things. The article should give you a good idea of what treatments are still out there.

Keep us updated on your visits, and don't hesitate to ask any other questions you might have.

[farmgirl]

What kind of massage? as in expressing oils?

Here is a post on gland expression which you may find interesting.

http://dryeyezone.com/encyclopedia/mgcare.html

[scoelicolor]

pythonidler I'm glad to know there are still a lot of things I haven't tried yet and I will keep you all updated on how things go!

farmgirl My Dr hasn't suggested any kind of lid hygiene so I use Systane lid wipes only once a week since it dries my eyelids badly, and plain warm tap water on cottonballs to clean my lids everyday sometimes twice daily and always before doing my compresses. And I use diluted Johnson's baby shampoo to wash my eyelids a couple times a week. The doxycycline seems not to make much of a difference and part of my lid margin on my right eye is pretty red and irritated. My Dr wants me to use Lotemax drops, but after seeing it has BAC, I can't bring myself to put it in my eyes. I also don't want to suppress my immune system if my eyes are currently fighting some kind of infection his directions were strange too, he wants me to put the drops on my fingers and then rub it on my eyelids. My pharmacist said she can't recommend I follow his instructions, especially since I am sensitive to BAC.

Anyhow, my doctor has me do 5 minutes of a moist heat compression, and then has me press firmly along my eyelid margin across every centimeter to express the oils at bedtime (I use the Bruder compress and heat it in the microwave with a mug of water for extra moisture because it seems more effective that way). My regular doctor only wants me to do warm compresses once daily at bedtime, and had said not to overdo it. Only the on call doctor said to do it 4x a day and she didn't see me in person, just talked to me on the phone. After reading the post on gland expression, I don't want to over-express,and cause more problems. it makes sense that it could make things worse so I will wait and see a new ophthalmologist for another opinion before doing that much to my eyes everyday.

This is a little off topic, but I didn't see any threads about it yet when I searched; Do your ophthalmologists use gloves when they touch near your eyes/use equipment/ add stains etc? My current dr has never worn gloves even when using his fingers to express my glands and I wasn't sure if this was because he wants to be more agile with tools and avoid poking me in the eyes. Just wondering everyone's thoughts. I know a lot of eye diseases can be started by viruses or bacteria, so I a little fear that I could get sick from going to the Dr. I have tried to have confidence in him and his choices, but if this is something unusual, I'd like to know.Thanks again for writing!

[pythonidler]

I can't remember my eye doctors ever wearing gloves. But I've never gotten an eye infection from visiting the doctor.

[Rebecca Petris]

Had an awful lot of eye doctors over the years. Never had someone wear gloves during an exam.