By the way Purple.

The doc would not put a lense in the eye even though is was flaming in his office and a cluster of filaments were removed. And I do not believe they refuse to prescribe pain meds because they genuinely believe the pain does not warrant it. Would have to be quite ignorant in the literature for that. They are either running scared because of DEA pressure, are so self-righteous as to assume all that request pain meds are "drug seekers," or both. OR they may also like you suffering as that ensures more frequent visits and more money for them. When you get a lot more years under your belt you will lose some of your faith in humanity if you are true to reality, even regarding those with the mystique of the white coat.

Hey, I'm sorry I haven't been around the past few days. My grandmother that I lived with for my entire life passed away on saturday. This is the first time I've gotten out of my saddened state and felt like coming on the computer.

I'm sorry you are having such a problem getting pain meds. I can identify with that. In 2003 I developed gallbladder problems. I knew about it, and we decided to wait until the summer when I was done with college to remove it. My primary care doctor had no problem prescribing narcotic pain meds for when I had an attack. However, when I had my last MAJOR attack, I wound up in the emergency room because I was in absolute agony. (imagine a kinife stabbing you in the gut and twisting and turning constantly). I was begging for pain medicine because the Percocette I had taken prior to coming was not even touching my pain. The E.R. doc who saw me prescribed Morphine. Now, I mask my pain very well. I can be in agony and still carry on a conversation. So since I was able to speak to her, the nurse thought I was not in that much pain. She started to roll me down the hall for an ultrasound, and I stopped her and asked where my Morphine was. She told me I didn't look like I was in that much pain, and she asked me straight out if I was "drug seeking". I was laying there scrunched up on the gurney with my hands clutching my side because I was in so much pain and I couldn't straighten up. And she asked me if I was drug seeking. I called her every name in the book and told her to give me my freakin Morphine or I was not going for the ultrasound. (an ultrasound can be uncomfortable anyway!) I eventually had to ask for the doctor because she was so against giving me any pain medicine. He basically told her that he had prescribed Morphine for me, and it wasn't up to her to decide if I should have it or not and to just give me the damn shot. I had a few other choice words for her as well. I was so insulted. Then once I was admitted they put a standing order in my chart for Morphine every 4 hours if I needed it. Well, the nurse on the floor didn't want to give it to me either. My parents had to go out and scream their heads off until she came and gave it to me.

How can a doctor or nurse decide what is painful for a particular patient?

I definitely understand that a lot of doctors are very ignorant when it comes to that. But they have to understand that there is a standard of care that they should be living up to.

You're also right that a lot of doctors are scared of the DEA. I read an article about that a few months ago, and the DEA is really cracking down on a lot of them.

I'm not naive. I know a lot about doctors. A lot of my family works in the medical profession, and I have been around doctors for my entire life. I was also a sick child, and spent a lot of my childhood visiting different doctors. (they think I have had my MS since I was about 13. I was also born with a lot of illnesses.)

I am only 25, but I am a very old 25!

There have been plenty of instances where I have gone to a doctor and thought he was a total jerk who just brushes off his patients, and I have left and never gone back. As patients, we've got to be ready, willing and able to go to as many doctors as it takes to find someone that we like and trust. I was fortunate that I didn't have to do that with my ophthalmologist because the second I met him I knew he was the doctor for me, and he has proven me correct.

I hope you are able to find some relief for your pain very soon.

Purple,

Sorry about the death in the family, can relate to that kind of grief...

There is ONE opthamologist that takes Medicaid in my town, and I live in a major city. He is from India and heartless, laughed at me implying I was a drug seeker. Ignored the article I presented him from "The Handbook of Ocular Management" which states my condition can involve "severe pain." Obviously mine is severe and chronic! He about has me blind in one eye for repeatedly taking off filaments with forceps. I cannot read any letters on the charts. My optometrist who has some knowledge with this (has no bandage lenses, cannot prescribe pain meds) is out of town for 5 more days. Is not much he can do anyway! I went to the optometrist covering for him today and he said I have three abrasions which no doubt come from the filaments removals of yesterday, plus several new filaments, but he cannot treat me. I can think of nothing else to do but go to the ER and beg or call the other eye docs in town and beg for charity or a very easy payment plan. I want a damn American doctor and one that has more to offer than yank, pull off the filaments, "tears twice a day, see you in 2 weeks"... I am beyond desperate. My neighbor said they could never do what I do, said they would end their life but I cannot. I love life!!

I am glad that you are not thinking of ending your life over this. It is bad, but nothing is worth killing yourself over.

I know the kind of pain you are in, believe me. I basically stayed in bed and lived on cold compresses when I had my abrasions. Not fun.

Can you possibly get to another city with a different ophthalmologist? How far would it be for you to travel?

It's not a bad idea to call and ask the other eye docs in town if they take medicaid. Sometimes the information that medicaid gives you is not the most up to date. Someone may have been added to the list since you last inquired. It can't hurt to get out the yellow pages and make a few phone calls. That's how I found my guy. Yep, I found him by looking in the phone book and asking if he takes my insurance and if I could be seen.

Purple,

I do not understand the philosophy of this one doctor. Maybe you can help. He did not want to put on a bandage contact because of infection risk. YET I had a lense on a month, taking it out cleaning it once a week, had no infection and the eye returned to full health. By not putting in a lense, I am collecting filaments and new one as soon as they are removed. So constantly, like at present, I have abrasions from the removals AND new filaments. These are the source of the pain, and I am about blind in the eye. Such frequent removals open me to scaring and permanent lose of eye sight. This may have already occured due to his constant use of forceps. A second doc will not put a lense in either, claiming it is "no solution," yet it should be obvious to all by now after four months and numerous treatments that the eye is not healing and needs a break, protection from crops of filaments, which the lense provides. Infection? Sure there is risk but you can use an antibiotic with the lense, and anyone that uses a contact has this risk. It just seems to me that warding off the slightest chance of getting sued is more important to them than giving me proper treatment. And they obviously have been little concerned about the pain.

I can't explain that, because I think this eye doctor is wrong. He should be trying to proctect your eye from further damage. If he is worried about infection, then let him give you a lens that you can change every day, or let him have you come in for frequent exams to make sure it is not harming you. That's what my doctor did when I had to wear a bandage lens when I had the corneal ulcer. He put the lens in for me and had me come back every two-three days so that he could change it and examine me. If the lens fell out, I went back sooner.

Infections can be dealt with if you develop one. The point now is to try to prevent your eye from developing these filaments and allow the surface time to heal.

Purple,

You are 100% right! My eye came completely back to life for a month with a bandage lense in. But of my three doctors, only one is willing to use one now, and he does not have bandage lenses! Ordered one but it is still on back order. If he does not have one when I go to see him Tues, am going to beg him to get one somehow from another doc. I have had no lense in for a month, just hope I have not reached the point of no return where a lense will not help. The violence done to my eye by the constant crops of filaments and removals is doing me more harm than a lense.

P.S. I simply could not take it anymore this afternoon and went to the er. Once I got to the doctor I became a curiousity piece as he brought assistants in to look at the eye under this special lamp and with a microscope. "Three abrasions and filaments," had never heard of such a condition and I educated him. I am thinking glad I could help, now let`s see how these heartless opthamologists like going around with constant abrasions and filaments in their eyes. Probably will will not happen in this life though... Anyway, this doc knew full well it hurt badly, anyone with half a brain knows this and that includes these lying slippery opthamologists. They are looking at the same thing in the microscope. He gave me 15 Lortabs. Could not cure me but was a human being...

Got a lense in now! Pain is way down, can use the eye. Had a dozen filaments removed. They grow like weeds. Doc said he has seen big muscle bound men reduced to children over one corneal abrasion. I have lived with several at a time for months plus filaments. This doc said he knew I was hurting. The other docs I saw are either very niave or dishonest.

It's a shame that you had to go to the ER to get some satisfaction, but I am glad they took you seriously.

So, you saw a new doctor who gave you a lens? Great! Is this new doc an Optometrist or an Ophthalmologist? (not that it matters, just curious.)

Have you been flushing your eye constantly with preservative free artificial tears? Sometimes you have to do it even if the eye doesn't feel dry. That might help prevent some of the filaments from building up. I mean, really, really overload it with tears. I used to use them 12-15 times a day if I had an abrasion or filaments. It kept the pain down a lot too, keeping the surface well lubricated.

I mean, really, really overload it with tears. I used to use them 12-15 times a day if I had an abrasion or filaments. It kept the pain down a lot too, keeping the surface well lubricated.

Yea I have spent half my money on tears over the last few months, use them at least hourly. Relief is very temporary and there is no long term help. The eye without at lense still goes completely down hill at night and a bucket of tears does not help. The doc I have now is an optometrist, but he worked in an eye center that handled diseases. He is knowledgeable and can do all the procedures. I do not know where the end is for this. Last two days I have just been praying and enjoying the relief.

The one good thing for me is that I've got an uncle in the pharmacy business, so he gets me all my tear drops and other medications for wholesale prices. I know how expensive it can be. Spending $15 a box on Bion Tears is just not possible when you go through two or three boxes a week like I do. My doctor also used to give me samples. Can you get samples from your doctor to help ease the cost burden? You also might try buying them at a wholesale club like Cosco or Sams Club or BJs. Even Wal-Mart or K-Mart or Target might be cheaper than your average pharmacy.

I am glad you seem to be getting some relief right now, and I am keeping my fingers crossed and praying for you that this works.

Hello Delilah, and welcome! :wave:

I get a *ton* of the stringy white pieces of mucus in my eyes. They are not really considered filaments. It's just mucus from your dryness. Filaments occur when a piece of mucus gets stuck to the cornea and it becomes painful and has to be removed by a doctor.

What are NAC drops? What does that abbreviation stand for?

What is the Muro 128 supposed to do?

Delilah,

I am one of the lucky ones with the filaments that stick to the eye and have to be removed by a doc. The daily pain from this condition has been horrible. Yes I have tried "mucomyst." Did not work for me but may for you. Is a mucous thinner... There are some natural products for dry eye, Theralife Eye and Bio Tears. Have you tried Restasis?? Welcome to the thread!

Purple,

Three days with the bandage lense back in, eye is stable. Doc says I need it. Am getting to enjoy a bit of life again. Cornea healed up in two days, including the abrasions and edema. Hope you are well.

Hello Jonny its Delilah and I had a few questions that I just wanted to know, first of all I wanted to know if you suffer from sinus trouble? I need sinus surgery and my sinuses are horrible, I was born with bad ears and nose. I also wanted to know if your a smoker? I just tried to quit again today, I haven't smoke now for 9 hours, I've smoked for 10 years I am 30 years old. May I ask how old you are? I just wanted to know if smoking causes the eye problems to worsen? How long have you suffered from this FK? When did it start and how? Does the mucus Filaments harden during the night and is that why they stick to your eyes? I am constantly putting eye drops in my eyes I don't even know how many times durning the day and night. Please let me know. God Bless Delilah

One more thing - my doctor described FK to me as looking like a bunch of teeny pencil dots on the surface of your cornea.

Please read and follow the posting rules.

Hello Jonny its Delilah and I had a few questions that I just wanted to know, first of all I wanted to know if you suffer from sinus trouble? I need sinus surgery and my sinuses are horrible, I was born with bad ears and nose. I also wanted to know if your a smoker? I just tried to quit again today, I haven't smoke now for 9 hours, I've smoked for 10 years I am 30 years old. May I ask how old you are? I just wanted to know if smoking causes the eye problems to worsen? How long have you suffered from this FK? When did it start and how? Does the mucus Filaments harden during the night and is that why they stick to your eyes? I am constantly putting eye drops in my eyes I don't even know how many times durning the day and night. Please let me know. God Bless Delilah

Yes, I have allergies, have all my life. Am 46, do smoke. I do not know when the filaments develop.. I use drops a lot too. It started about 4 months ago with burning and itchy eyes and pain in the right one only. Then I noticed I was about blind in the right eye! Is when I freaked and went to the doc the first time. He thought at first that I had only rubbed my eye, but when abrasions persisted he investigated and found filaments. It remains in only one eye, and has worsened over time. The eye has tended to be least painful in the a.m. and worsens with use as the day goes on. I have tried all remedies that I have learned about. Nothing has helped but a bandage contact lense which is a remedy with infection risk. BUT leaving my eye open to being battered with constant filaments and abrasions is also risky, infection and scaring which can lead to lose of sight. For now am caught in a catch22, but have not been in any real pain since the lense has been back in, 3 days now. I will take what I can get!

Thank-you Purple and Jonny for all of your information, I am on day one of no smoking, I really think that the smoking is causing my eyes to worsen. As it constricts the blood vessels in your body it also constricts the tiny blood vessels in your eyes and I feel that it maybe making my eyes worse, I am going to try my hardest to quit and see if it improves. I was just wondering if you smoked because when I had went to the Moran Eye Clinic I had seen a specialist and he diagnosed me with MGD and said that in younger people its caused my smoking. I didn't believe him at first but I think that it maybe a huge part of my eye trouble.
I also want to apologize to the moderators if I may have done some things that went against the posting rules, I will be more careful. I think that having bad sinuses and being that I am always plugged up and can't breathe it's backing up in my eyes. So this filamentary keratitus is something I most definately don't have, I just suffer from severe dry eye and these mucus strings, I have no idea why it all of a sudden just came about? I never had trouble before? Thank-you again for all your help and I will keep in touch. D

Jonny, I am so glad that you are finally getting some relief. When do you have to go back to the eye dr?

Delilah, my dry eyes came about all of a sudden too. That was almost 5 years ago. After much investigating, we figured out that it is partly due to my allergies, and partly due to my auto-immune disorders. I have very, very bad sinus allergies. Really, I have upper respiratory allergies in general. I have ALWAYS had sinus problems. I am 25, and when I was about 12 I developed a bacterial cyst in my sinus cavity that had to be surgically removed. Since then my sinus problems have gotten much better, but they're still there. I also had my tonsils removed last august. Doc said it was one of the worst cases of chronic tonsillitis he had seen in a long time.

My allergies are just awful today because the pollen count in my area is fairly high.

I have pretty bad MGD too. I didn't know that it could come on because of smoking. That's not what did it to me, but that's interesting.
I do not smoke. Never have, never will. Nobody in my house smokes, nor do any of the people I usually hang out with. It would be the worst thing in the world for my allergies.

Purple,

I go back to the doc thurs, got to get the lense and eye checked often. Yea, is great getting pain relief!! Can see well out of it now too. But, is still scary not knowing what is wrong with me. Hope I am not dependant on a bandage lense for life, but hope even more, that it continues to work. God have mercy...

Hopefully the bandage lens will give your cornea the rest and protection that it needs so that it can heal and you won't have this problem anymore.

Hopefully the bandage lens will give your cornea the rest and protection that it needs so that it can heal and you won't have this problem anymore.

That has been the hope for over 4 months now, and as soon as the eye heals the docs take off the lense and it is back in trauma mode within a few days...

Jonny :
I have monitored your case for a long time. Purple has provided good insight.
It is known that the management of more severe forms of filamentary keratitis,a high-water (~70%), soft bandage contact lens with prophylactic antibiotic drops is needed. Be prepared to manage this condition for prolonged periods. Filamentary keratitis may take weeks or even months to resolve, depending on the etiology and the aggressiveness of therapy. Even after the filaments dissipate, the underlying disease must be controlled or recurrences are likely.

You stated that your last Eye Doc (Optometrist) was willing to work with you and provide a soft bandage contact lens. This appears to be the best management care, and you may have to accept the fact that you will need to wear this bandage soft contact lens for a long time while to underlying symptoms are resolved.

Stay postive and you will heal :)

Eyes

Jonny :
I have monitored your case for a long time. Purple has provided good insight.
It is known that the management of more severe forms of filamentary keratitis,a high-water (~70%), soft bandage contact lens with prophylactic antibiotic drops is needed. Be prepared to manage this condition for prolonged periods. Filamentary keratitis may take weeks or even months to resolve, depending on the etiology and the aggressiveness of therapy. Even after the filaments dissipate, the underlying disease must be controlled or recurrences are likely.

You stated that your last Eye Doc (Optometrist) was willing to work with you and provide a soft bandage contact lens. This appears to be the best management care, and you may have to accept the fact that you will need to wear this bandage soft contact lens for a long time while to underlying symptoms are resolved.

Stay postive and you will heal :)

Eyes

I totally agree, and thanks. The lense must be worn for an extended period along with measures to encourage normal tear production in the offending eye. And, the optometrist, though possessing less formal credentials, is the most knowledgeable and sensible doctor I have found for this condtion.

I hope he gives you good news when you go back. Keeping my fingers crossed for you.

:nono: Hello Everyone I went to see Dr. Tabin in Salt Lake City at the Moran Eye Center, he is WONDERFUL!!!! He actually took time to do tests and talk with me, I finally did the schrimmer test and Im at a .3mm, not good, I couldn't even wet the paper. He said there is no way in hell I have Filamentary Keratitus and he even told me that some people cannot even blink with out having their eyes completely shut on them from the dryness. :eek:
I couldn't believe how much pain you that suffer from this go through and I only thought I had FK because of the stringy mucus that comes out.
So he wants me back on the Restasis for 3 months and he also gave me a perscription for NAC drops which I am going to try.
He said he wished he had and answer as to why some of us just out of the blue get severe dry eye but he didn't and he said if this doesn't work then he wants to try the goggles or the punctal plugs, but I've heard too many horror stories about the punctal plugs :eek:
He said there are 3 aquaous layers and my top layer isn't producing the right amount of mucus and he said that the reason for the stringy mucus is that my body is producing more and more mucus to try and "fix" the problem, in result of the stringy mucus even though my eyes are dry as bones :confused: So damn stupid and I was so damn mad I started crying, which he laughed and said it was a good sign I could cry!!!! I just couldn't understand why someone could all of a sudden get severe dry eye and be diagnosed with MGD??
But he explained it like why do some people get diagnosed with cancer? Why do some people drop dead of heart attacks or strokes? Then I could see the big picture and there isn't any answer but a good explanation to why this was happening and I was very happy that he actually took the time to explain to me what was going on, unlike that other doctor over there I went to see the first time, Dr. Olsen, he could of cared less about me and I drove 2 and a half hours to see him and waited 2 hours in his doctors office and he gave me a stupid 15 minutes and told me it was all caused by my ciagarette smoking :confused:
Speaking of smoking today is day #8 for NO-SMOKING :bouncing: Most of you do not know me but I was a heavy smoker, 2 packs a day 10 years and Im only 30 years old and 8 days ago I just had enough and smoked my last smoke and was done, my eyes do show a bit of improvement from no-smoking not too mention its already improved my breathing and I don't smell like a dirty ash tray:)
Well my trip to Salt Lake was good and I got to see my 2 brothers and my father and finally get an eye doctor well specialist who actually cares and took the time to do tests and explain to me my options and explain to me in full detail why all of this was happening. So I will be back on the Restasis and try the NAC drops, keep on the no-smoking and keep my fingers crossed and pray that someday I will be what Dr. Tabin said, "comfortable" I will someday be able to enjoy the day without having to be "totally consumed" with my eyes.
Its bad enough to have severe dry eye and on top of it have these gross long, rubbery mucus strings coming out 24-7, blocking your vision while your driving or while your trying to have a conversation, its embarassing and extremely uncomfortable, Purple knows what Im talking about. And for Jonny I prayed for you when I was in Salt Lake and I actually thought about all my other buddies on the other eye website I cannot mention on here but when the doctor was describing the FK and how you described your symptoms I just thought to myself that I was lucky not to be going through what your going through and I felt so sad inside because I don't know you but I have an idea of what your going through.
I couldn't imagine the pain with FK and I am thank-ful to you and the eye doctor who fully explained what FK was, I had no idea it was that bad and I only had thought I had FK because the article I found described long stringy mucus in eyes. I pray for all who suffer, I only hope that science will improve more this year and come up with a way to "heal" all our eye problems. Dr. Tabin said that my eye problem is actually "simple" my Meibomian glands are not working or are plugged there just isn't any way to fix them, except for the warm compresses and eye massages that will help get the oils flowing, I just wish there was a way to get to these damn glands to fix them :confused:
Well I hope that the moderators don't think this is too long but I had to explain everything and say thank-you to you Jonny and you Purple for your support and advice and for taking the time to listen and read this. I also will be responding to your threads and hopefully giving some helpful advice or just an ear:) Ciao D

Hey Johnny, what's going on with your eye?


Delilah, I am so glad that you finally got a diagnosis. Glad you don't have FK.
It sounds like this guy knows what he is talking about.

Btw - what your doctor said about some people's eyes getting stuck when they blink - that's me.

I hope the Restasis works for you. It's just too bad that you have to travel so far to see this guy, but I am glad it was worth it. He sounds like he's the same kind of guy as my own ophthalmologist. He really wants to get to the bottom of things and try to help. Only, mine is 3 miles away. I used to travel to Baltimore, MD to see one of his friends who happens to be one of the top dry eye specialists in the country. He agreed with everything my own doctor was doing and told me that while he was very glad to see me, I have a doctor who is just as good as he is so I should just stick with him and do what he tells me.

I was just wondering if you thought maybe about the new procedure called Amniotic Membrane Transplant? It would most likely cure your FK and restore your poor cornea. When your eyes get stuck together does eye drops help it? Do you have to have eye drops on you 24-7? Im so sorry, I get my eye drops tomorrow actually, they are just so damn expensive. I am very thank-ful I don' have FK, that seems to be 100 times worse than my dry eye, MGD and stringy mucus. I will keep you all updated to how the NAC drops work and back on the Restasis. D

Delilah, my corneas actually are looking pretty decent at the moment. My ophthalmologist is a corneal specialist and he does all of the surgeries and stuff, but he is managing me with medication right now. Like I said, my corneas actually look good. Radical surgery like an Amniotic Membrane Transplant would really be a last resort for me. I don't have any FK at the moment, thank God. I haven't had that in about a year. My eye doc is really great at managing my condition and working with me.

Yes, I do need to keep tear drops and allergy drops with me at all times though. Plus, I have drops that need to be put in 4X a day no matter what, so wherever I go they have to be with me. I've got a cute little makeup case that fits in my purse to keep it all in.

Im so sorry you have to go through so much. I know that Amniotic Membrane Transplant is something extremely serious and yes I would too consider it the last resort. I got my NAC eye drops today but I haven't tried them yet. My Restasis was $114.00!!!!!!!!!!!!!!!! Its freakin ridiculous that these pharmaceutical companies can charge whatever they want and I have no insurance at the moment so its all paid in cash:( I have 2 serious surgeries that I need and I can't have them until I get insurance. Life is tough, I didn't know that FK could be controlled, I thought that you had to suffer with those horrible painful sticks of mucus in your eyes all the time.

That must be a total ***** to have to carry around that little case with all your eye goodies. I want you to know that I truely am very sorry and I am very empathetic of what your going through. I thought it was a huge bother that I have to carry a small mirror and tissue wherever I go. I got the NAC drops delivered to me from Leiter's pharmacy it's a compounding pharmacy in San Jose California. The lady that took my order was rude as hell and I told her that I wanted the $7.00 shipping fee and not the $14.00 one and she did it anyway!!!!!!!!!!!!!!!!!!!!

I usually let things slide but today I am going to make a huge complaint, here I am, the customer, the suffering customer, they wouldn't have a job if we didn't buy products and she treated me like dirt, rushed me, was extremely rude to me and even argued with me on the phone!!! I said I wanted the small bottle because I want to see if they work first and she said they only had the bottle that costed $75!!!!!!!!!!!!! I said no you have another bottle for $35 and she rudely replied who told you that?

I said the other lady I spoke with yesterday!!! She put me on hold and said your right and continued to get my credit card information, I specifically told her the $7 dollar shipping and not the $14, I just had forked over $114 for Restasis and then she pulls this crap, I think its wonderful that they ship you eye drops, especially ones that are compounded but there is no need for rudeness and dishonesty. Well now that I have vented lol, I want you to know that I am truely sorry for your FK and your poor eye problem, hopefully technology will keep improving and find a cure for FK and for Severe Dry Eye and MGD. I also wanted to thank-you for all your support and info and advice and know that you can vent on me anytime. Ciao Delilah

LOL, I know Leiter's Pharmacy VERY well!!!! I used to get compounded fluorometholone preservative free drops from them as well as Cyclosporine drops (before Restasis came out) and some other drops. They have a lot of my money! They have a wonderful service. I did sometimes encounter a little rudeness too. I do remember that I used to deal with a guy named Brandon sometimes and he was very nice, and very helpful. The pharmacists Mort and Chuck Leiter were also very helpful to my doctor when he was trying to find some drops for me. In my research though, I came across another compounding pharmacy that makes specific ophthalmic compounds like Leiter's does. That's right. Leiter's is not the only game in town. There is a pharmacy in Coventry, Rhode Island called Pawtuxet Valley Prescription and Surgical Center - Apothecare. Apothecare is their compounding division. They've got the same list of compounds as Leiters. Maybe they don't charge as much. You could look into that.

Thank you so much for your kind words. I have empathy too, for anyone who is suffering with this awful dry eye problem. Nobody knows what it is like and how bad it can be until they have it themselves. I've been very lucky to have a doctor who actually knows what he is doing and is treating me appropriately.

I only had FK for a month or two. It went away when we got my dryness more under control. My doctor also called it "Punctate Keratitis" because in addition to needing to have filaments removed I also had a bunch of tiny erosions about the size of a pencil point. He uses ocular steroids with me to continue to keep my inflammation down. If I didn't have that my eyes would be a complete mess.

I really feel for you not having insurance. I went through that for a time too and it was very rough. My two saving graces were that my uncle is a pharmacist/pharmacy owner and was able to get me all of my prescriptions at wholesale value, and my ophthalmologist whom I was seeing 3-4 times a month at the time, sometimes more, is my good friend and refused to charge me. But all of my other doctor visits had to be paid out of pocket. $250 for the neurologist, $70 for the internist, $150 for the immunologist, $150 for the orthopedist (I had a broken kneecap at the time), physical therapy costs, lab tests, and the list goes on. It's not easy. Now because I have MS, I was able to get back on my dad's health insurance. I am technically considered a disabled dependent, because I have MS and I live with him. But I'm not disabled. I just have to play the game until I can get a permanent teaching job with my own insurance.

I talked to Chuck Leiter yesterday LMAO and I told him what happened, how that woman was extremely rude, how she over charged me, put the wrong Doctor down on my perscription and spelled my town wrong!!!!!!!!!!!! He called back and apologized and it pissed me off he said she doesn't mean to be rude she's just straight to the fact and that she is going through a divorce, I was like it doesn't matter what is going on in a person's life, you can't go around taking it out on other's!! I didn't say that though which I wish I should of, so I am going to e-mail him. He also said he's crediting my account for the 13 bucks she over charged me and he was a bit rude himself when I had one more question he said very rudely, "make it quick because I have a doctor from New York on the other line!!!!!"

So Im going to check out this other pharmacy you mentioned, thank-you very much because these jerks are not going to get any more money out of me!!! MS is very scary as it really messes with your eyes, I had a friend that has MS, were not in touch anymore but her eyes are very bad. I think that they should have some sort of disability for people who suffer from FK and Severe Dry Eye, because it's been extremely hard for me to even function with how much I am consumed with my eyes day in and day out. Its the damn mucus strings that bother the most, they get in the way of my vision and I can't always pull them out without looking into a mirror and I feel so damn embarassed when I am around people I don't know and Im blinking fast and I have to move away and pull out the mirror and tissue.

Your right, people do not know what its like to have eye problems unless they actually have it happen to them. MGD, FK and Severe Dry Eye can happen to anyone at anytime and I've told all my friends that, they are afraid but I was like don't dwell on it, unless you start to see symptoms, especially in dry states like Idaho and Utah, its worse. I hope that your eyes are feeling better and I also wanted to ask you what eye drops do you use for those mucus strings? Thanks D

Hey, I wonder if the dr from NY who he was on the phone with was MY dr!!!! He has a few other patients who he uses them for and he is always calling them! that would have been funny. I think Leiters has a great service and it's wonderful that they can provide this specialized ophthalmic medication, but they have to be nice. I'm surprised that a business owner would be rude to a client. You especially need to be able to trust a pharmacy. I would be a little leery of them putting the wrong info on the prescription too.

There is really not one specific eyedrop that I use for the mucus strings. I flush them out with a lot of Bion Tears, and if I have to I pull them out from the corner of my eye with a q-tip. (not good though, b/c then a piece of the cotton from the q-tip gets in my eye and I have to get the dr to take it out!) I also use allergy drops called Alamast to try to prevent the mucus strings from forming, as well as anti-inflammatory steroid drops. I find that the thicker eyedrops such as Celluvisc or Soothe can actually contribute to the mucus strings.

My friends don't understand either. I actually lost a friend because of her insensitivity to my illness(es). I couldn't deal with her anymore. She thought I was a big hypochondriac. But when she had the littlest bit of an eye irritation then she complained and complained and wanted my help. So I told her that now she knew what I felt like 24/7. But she still didn't get it. Nobody gets it. My other friends are very understanding and they don't even look twice anymore when I put my eyedrops in at restaurant or the movies. But sometimes I think that they think I make too big of a deal out of it. I just try not to talk about it with them anymore. That's what I come to healthboards for.

Jonny412 : How is your high water(70%)soft bandage contact lens treatment progressing ? I truly hope your Optometrist has found the right answer for you FK problems.

Purple : Keep "looking" for the right combination of drops for your "own" comfort. Forget the "so called friends" that have no insight to your eye discomforts. (Re : Your IOP, I hope it is still staying in the 12mmHg to 15mmHg normal range, and that Flarex is not going to drive the IOP back up).

Just know that "THE EYES" -- also reads "THEY SEE" if you just move the letters around ! :cool:

Eyes

Purple, I totally understand how you feel, many of my friends don't understand either, the only one that really does is my best friend of 19 years, in fact I have shown her the long rubbery mucus strings when I have to pull them out of my eyes and now she knows. Im using the NAC drops but I feel that they are not making the strings go away? I thought for sure they would dissolve them completely but I was wrong. About using a Q-Tip to pull the strings out, you should try what I do, take a kleenex and twist it to a point and pull them out that way, it won't leave any little hairs or fibers in your eyes. Im sorry your friends are not supportive, they just don't understand what it's like having eye problems, especially ones like we have.

I sometimes wish that all of my friends could have my eye problem for one week so they know what I go through, I know that sounds bad but it would really give them an idea of how horrible my eye problems are and what I have to deal with every single day and night. I am not sure if the Restasis will work with the NAC drops, but I am seriously doubting my eyes will ever return to normal. Do you know if anyone's eyes have returned to normal? Like people with severe dry eye and anyone else that suffers from these sick mucus strings? Im wondering if anyone had any luck and if they are now well? Well I wish you well and I wanted you to know that I know what it's like with friends. D

Delilah,

Sorry you are paying out so much for Restasis. I have almost a whole months supply I am not using, luckily have insurance. As to the mucomist, did not work for me but of course may for you. I got a month`s supply for $25 at a compounding pharmacy. They had to order the ingredients. Look around....


Thanks everyone for the concern. The high water bandage lense is controlling it nicely. Also I took my last dose of Klonopin about 10 days ago so maybe the dry eyes will improve. I am praying for everyone and will keep reading the thread. Two docs refused to put the bandage lense on and prescribed Restasis. Frustrating! My eye was such an ugly mess that no one could bear to look at it. No lense, no pain meds, one would not even remove filaments outside of office hours. But a third doc said I should not be on Restasis while I am getting abrasions from filaments as it knocks back the immune system and thus the eyes ability to heal. He also said that I was at risk of infection without the lense as well as I was continually getting filaments and abrasions. So he put on the lense, stopped the Restasis and I take an anitbiotic drop. It is this plan that I believe to be the best one. I got enough going on with Klonopin discontinuation symptoms to have to deal with severe eye pain, and I got an edema before with the lense off! With the lense on I am protected from these intrusions, the cornea stays good and moist. It needs to be the right kind of lense, bandage lense that comes in a big tub.

I was wondering if you tried the Muro-128? This eye drop is specifically for corneal edema and abrasions, its $20 bucks in the store and I use it because it helps with the mucus strings. It only gets rid of them for a short time but when I go somewhere I use it and it does burn the heck out of my eyes. Im going to keep using the NAC drops to see if it improves my eyes, not too mention I've quit smoking so thats helped quite a bit with my inflammed eyes. Thank-you for your concern and I am also very sorry your going through so much pain, I cannot imagine what the FK must feel like, it sounds so painful. Hopefully in time technology will come up with a cure for MGD, FK and Severe Dry Eye? Until then don't give up. Ciao Delilah

I was wondering if you tried the Muro-128?

Yep, you name it, I have tried it.... It did not help with the filaments but sped up the healing of edemas when I got them. Quitting smoking helped huh? Looks like I am going to have to do the same, though I am sceptical about any pronounced change from it. Looks as though I may be in for long term use of a bandage lense. Risky and not a solution, but sure beats the alternative, a nasty red swollen eye and unbearable pain....

Your going to have to wear the bandage lense all the time? Isn't there something else they can do? OMG I couldn't handle wearing that every day but if your eye is swollen and hurting, thanks for telling me about the Muro 128, wish it would of helped with the filaments, I haven't noticed that the NAC drops are helping with dissolving the mucus strings, I wonder if I need to use them as long as the Restasis?

Your going to have to wear the bandage lense all the time? Isn't there something else they can do? OMG I couldn't handle wearing that every day but if your eye is swollen and hurting, thanks for telling me about the Muro 128, wish it would of helped with the filaments, I haven't noticed that the NAC drops are helping with dissolving the mucus strings, I wonder if I need to use them as long as the Restasis?

There is a surgery called PTK (I think) that regenerates the corneal epithelium. It is all pretty complicated but in essence, without the lense, I am being putting into a state of constant corneal abrasions caused by the filaments that stick like glue. The devil himself could not have thought this up... Thankfully for the rest of mankind it is rare... Restasis may be tried but I do not have the go ahead yet. If you are getting abrasions you are not supposed to be on this drug as it can interfere with healing. Yet two docs told me to take it and would not put in a lense!! Had I not informed myself on the net and found a doc with a different philosophy I`d be suffering right now and showing up at the er begging for pain meds.

Delilah, I know that you told me once before but I can't seem to find it here - what are NAC drops?

Leiters pharmacy or Apothecare pharmacy, you have to have a doctor perscribe them. They are called C-ACETYL-CYSTEINE 5% the doctor has to write the perscription and you can fax it to Leiters pharmacy then they will call you back and you pay over the phone, be sure to get the small bottle first if you haven't tried them because it isn't worth it to buy the large bottle. They will ship them to your house and after you open them be sure to store them in the fridge they are only good for one month, so far they haven't helped with the stringy mucus in my eyes, I thought for sure they would dissolve them completely but they didn't.

How are you doing? I went to our local Diva Drag Show and it was so much fun, I can't believe that men can run and jump in high heels, I can barely even try to walk in them as a woman lol. Some of those guys look better in a dress than I do and that is so sad lol. Anyway's get back to me. Ciao D

Delilah, the reason I was asking is because my doctor mentioned to me that one of his patients had asked him about Castor Oil eyedrops and I thought that might have been the "C" in NAC. What are these NAC drops supposed to do for you anyway?

I will mention the NAC drops to my doctor when I see him on saturday and see what he says. He could just call Leiters anyway. I have ordered drops from them many times before. So have some of his other patients.

Did you think about using the other pharmacy I mentioned?

Delilah, if the NAC drops are used to dissolve mucus, aren't you concerned that they are damaging your already fragile tear film? I mean, a very important part of the tear film is the mucus layer.

OMG, I never thought of that? So maybe the NAC drops are drying out my eyes even more? I've started to notice they are a lot more dryer, the reason why I wanted to try them was to see if they would get rid of these long strings of mucus in my eyes, I can't take it anymore and I don't know what to do? Maybe I should try the Castor oil drops? NAC is compounded from mucomyst which is used to loosen mucus for patients with ephysema and TB. Its a mucolytic agent, NAC drops are often used for FK they are suppose to help dissolve the filaments in patients eyes and when I read this and I thought I had FK I thought I would try these drops to see if they would get rid of these strings of mucus. The biggest problem I deal with is these horrible mucus strings in my eyes all the time and it effects my daily and nightly life. If I could only get rid of that problem I'd just have the Severe Dry Eye, which isn't any fun but it would make a huge difference if I only had to deal with that.
I am going to check into these castor oil eye drops, thank-you for the information, I haven't checked with the other compound pharmacy, in the mean time I am going to do some research on the NAC drops, I hope I am not ruining my eyes even more? I never thought about them drying out my eyes even more? I wish there was something I could take or do to get rid of this problem all together, it's ruining my life and it gets worse and worse, I take vitamins, do warm compresses, everything you can imagine and nothing is working? Well get back to me and how are your eyes doing? D

Delilah, I asked my doctor about your NAC drops and he said that there is no reason for me to use those drops since I don't have FK. He agreed with me that it could possibly harm my tear film if I were to use a mucolytic drop. He wouldn't even think of prescribing that for me. Why did your doctor prescribe it for you if you don't have FK?

I am going to try the Castor Oil drops. I am waiting for them to arrive from Leiter's. I just spoke with them and they said they are sending them out today. My dr thinks that might help improve my tear film and maybe provide me with some comfort. But you know, I've got to call him when I get them because I didn't discuss with him how many times a day to use them. Maybe he told them when he called in the prescription and they put it on the bottle.

My eyes are burning terribly today. had a checkup a few days ago and my IOP seems to be staying low enough, so at least that's good. But they're still very itchy and dry and light sensitive. It's never going to go away. I do the hot compresses and everything but I can't keep up the regiment all the time. It's too time consuming. :(

Hi Purple Im so sorry your going through a rough time, you have good days and bad days right? I hope your going to be okay, I know what you mean when you said, "it's never going to go away" because that is how I feel about my eye problem. What should I tell my doctor? Should I write him a letter? I need to call him and see if he can write a perscription for the Castor Oil eye drops as well. Im going to tell him what you said that your doctor said thats not good to perscribe the NAC drops if I didn't have FK. Well my eyes have been horrible as well, going on 2 months now no smoking and I thought my eyes would of improved more, they have improved a bit but nothing dramatic. God Bless you and Have a Happy Easter, hope the Easter Bunny Brings you lots of chocolate :wave: LOL yeah were too growin up for the Easter Bunny but who cares when you feel as bad as we do. I'll let you know what my doctor says and I hope the castor oil eye drops work for you as well. Ciao Delilah

Yeah, when your eyes feel this crappy only chocolate can make them feel better. :) When I had my corneal ulcer a few years ago I was in so much pain and so scared, but then my mom brought me chocolate and I felt better! Mmmmmmmm. Chocolate.


I think you need to call your doctor and ask him why he prescribed the mucomist drops (NAC drops) for you. I mean, just flushing constantly with tear drops will wash out the mucus strings. I use allergy drops which also helps to get rid of the mucus strings.

We were at my brother's for Passover last night. (I'm Jewish) His girlfriend was cooking and cutting up onions. I was helping her in the kitchen. I thought I would be OK. About 10 minutes into it my eyes started burning so incredibly that I had to get a cold wet cloth and leave the apartment. I went and sat on the roof in the little garden they have up there (it's a big apartment complex) and I told my mom to call me on my cell when it was safe for me to come back down! My eyes are still irritated because of it and it is almost 24 hours later. I used the Castor Oil Eyedrops because they were in the refrigerator and they were nice and cold. I had a lovely evening, but the intense burning in my eyes put a huge damper on it for me. I could barely keep them open to read during the traditional seder we had. I guess I'll have to tell her next year to please cut the onions and cook them before I get there!

Happy Easter and Im so sorry your eyes were buring during your celebration:( Today my eyes are even worse, lucky it's raining here for some moisture. I am going to call my doctor tomorrow and ask him why he did what he did and ask him to please write a perscription for the Castor Oil eye drops. Along with everything else my stupid back went out, so now I get to go to the chiropractor, I am only 30 and I feel like I am 80 lol. Well enjoy your Sunday and get back to me when you can. Delilah

Hello,

I am sorry for those still suffering the eye troubles. Sure is a difficult thing, and if i hadn`t found a doctor to put in and leave in a bandage contact, am not sure what I would have done. Eye pain just cannot be ingored or adapted to like others kinds of pain as it is so "in your face"... I do not think I am healed from the filamentary keratitus as I still feel to old sensations sometimes, though there is no real pain, watering, swelling, etc. Really do not know what the end will be, but I keep praying, for all of you and myself. Let us keep this thread alive, and if anyone has any questions for me I`d be glad to answer. :)

Johnny I am glad to hear you are feeling better. One day hopefully you will not have to deal with this crap at all anymore.

I went to the eye dr today and he said that my corneal surface looks very good. But my eye allergies are driving me nuts.

Delilah, my doc said I have to give the Castor Oil drops a few more weeks to really work. He said that if anything, it will help improve the quality of my tears and just help my eyes stay healthier overall. He said that they looked really well lubricated today. The only drops I had used before seeing him were the castor oil drops, so maybe I'm onto something here. I just wish I could get them from a pharmacy in NY and not have to pay the shipping and handling fees to get it shipped from California.

I ordered my oil drops yesterday, thanks for all the info, my doctor wants to put plugs in but Im too afraid. Johnny I am very sorry your poor eyes are bugging you again. I was wondering how long you've been suffering from FK? When the FK hits how long does it last? How in the hell can you even deal with that when it happens? That must be horrible, can that just happen to anyone? Also purple I didn't know that the compouding pharmacy in New York didn't have the oil drops? Sorry you have to go through Cali to get them, since I am in the West it's closer for me, even though they were jerks to me :nono: It's all good, Mr.Leiter apologized to me too lol and credited me my money back for the shipping, so it's all good. My eyes are still filled with mucus strings and dry as freaking bones, Im on the Restasis and tomorrow I go see my local eye doctor and Im going to get some steriod drops for the swelling inside my eyes, I hardly use them but when its needed I need them. Take care all of you and I will keep in touch, if any of you need to vent I am here. Ciao Delilah

Castor Oil Eye drops are working wonderfully!!!!! I've only been using the drops for about 5 days now and they are doing wonders for my eyes. My dry eye in the morning is still the same, but the dryness durning the day is much better and the mucus strings are not as bad and I am not having to use my other artificial tears as much. I wanted to thank-you for introducing me to these eye drops, they are the first ones in 4 years now that have done anything and have gave me some relief. I am also taking Eye Caps the vitamins, Flaxseed and Fishoil and Vitamin E every day. I've been taking the vitamins for a long time, but I barely started the Eye Caps vitamins a week ago as well.
Im hoping that the Castor Oil Eye drops will cure the dry eye problem and maybe boost up my Meibomian glands to do their job right? I feel a lot better now, better than I've felt in 4 years after using these Castor Oil Eye drops, I am still on Restasis and I am going to continue using the Restasis as well along with the Castor Oil drops and hopefully one day I will be able to wake up in the morning with no dry eye but that is a far stretch, right now I am enjoying not having to pull mucus strings out of my eyes and having some moisture is quite nice. Hope you all are feeling better and let me know how the drops are doing for you purple. Hope Johnny is doing better as well, maybe everyone with dry eye should try these drops? So far it's helped me, I am not completely cured but I do feel a lot better. I'll keep in touch. Delilah

Delilah I am glad that the castor oil drops seem to be helping you. Nothing seems to be working for me. It is so weird how the condition of my eyes differes so much from one week to the next even though I do the same things every day. Last week on wednesday I went to the eye dr and he said how fantastic my cornea surfaces looked and that they didn't look dry at all. That lasted for about two days. Over the weekend they started to feel drier and drier. On monday, all day I felt like something was poking me in the right eye. Now, I get REALLY nervous when I feel that, especially in the right eye because that's the eye I had the ulcer in 4 years ago. The cornea in that eye is much more fragile than the left. So when I came home from work on monday still feeling like something was in there, I called the doctor's office and they got me in as an emergency. He was done with his patients for the day but he waited for me. So, I thought I had something in my eye. No, nothing was in there. I just had such a bad dry spot on my cornea that it was giving me that feeling. :rolleyes: How can I go from having fantastically lubricated eyes to feeling slightly dry to having bad dry spots in less than 4 days when I do the exact same thing every day? I asked my doctor, and cutie pie that he is, he just shrugged and said "I don't know. It's just because you're Elyse."

No doc has any answers for me either as to the sure underlying cause. But thank God I found one that would keep a bandage lense in long term. I was literally about to lose my mind, the stinging, having to shut the eye, sensation like a thorn was in there all the time, swelling, redness, watering. The devil had to have invented that torture... And I was getting edemas (swollen cornea) for all the filaments and susequent abrasions. But the bandage lense controls it! 7 weeks with it in now, no real problems. I take an antibiotic to prevent infections. There is still infection risk but there was the same without the lense due to all the abrasions. It is all in one eye, doc said that is very rare. Tear breakdown time in the offending eye was normal at last visit so maybe I am on the road to healing. I take fish oil and use tears every 3 or 4 hours.

Jonny, I am glad to hear you are doing better. I hope it continue and you make a full recovery.

Jonny, I am glad to hear you are doing better. I hope it continue and you make a full recovery.

have you considered a bandage lense yourself? It is like keeping a constant source of moisture on top of the cornea. Also, do you know if someone can theoretically wear such a lense for the rest of their lives? I mean in my case something has to be done, it`s either control it or remove the eye as crazy as that may sound. Last round before going with the lense I had 15 filaments stuck to the cornea plus an edema. It was unbearable.

Jonny, I had tried contact lenses a few years ago and discovered that my eyes were too dry to hold them in, as contact lenses float in your tear film, of which I have very little. I wore a bandage contact lens for a few weeks when I had a corneal ulcer, but there were days when it just would not stay in due to the dryness. I was not allowed to put the lens in myself fue to my fragile cornea, so if it fell out I had to call my doctor and go in and have him put another one in. I don't really have a reason to wear a bandage lens on my eye(s) right now. Thank God, I have no abrasions or filaments. Bandage lenses would not help with dryness. Since I have no moisture in my eyes, a bandage lens would be almost impossible to keep in. Only if I ever had another abrasion or ulcer or more filaments would I use a contact lens again. Right now, having a contact lens in either eye would just do me more harm than good. For me, there is more of a chance that my eye would be too dry and the contact len s would move and scratch my cornea.

Thanks for the thoughtful suggestion though. I am glad that the bandage lens seems to be working for you. You know, I don't know how long one can use a bandage lens for. I don't think there is a time limit. I mean, people who wear the contact lenses that get left in only take them out once a week or something like that. People wear contact lenses every day without having a problem. Just that yours has to be left in 24/7. How often do you change the lens or get it changed by your doctor?

I wish there was an answer for you Purple. The fact that you are coping says a lot. Maybe if you soaked the lense often with tears? I get the lense changed every three weeks.

The aversion to keeping in a lense among some docs is scary. Like if my current docs retires or stops practicing for some reason down the road. Amazed me how stubborn some were in the face of my suffering. They had a nasty watery eye full of filaments with abrasions there to look at. One told me it should not hurt that bad! There comes a point when you have to throw in the towel and pick the lessor of two evils. There was also an infection risk without the lense plus risks of scaring and edemas. There have been some tv specials on the healthcare crisis, noting that the average time the doc spends with a patient is 7 minutes and not long enough to well diagnose and treat problems. One advocate for them said they are not being paid enough money to spend more time... Well, if they cannot or will not give proper treatment for the money they are getting then they should not take the patient...The doc I have now though is a wonderful guy and gives all the time I need. It can sure pay to shop until you find a doc you like!

No, unfortunately even soaking the lens with tears would not help me. If I had a real reason to use a bandage lens then I would have to try, but just having dry eyes alone is not a reason to use a bandage contact lens. When I had that nasty ulcer I used one for a few weeks. It really helped tremendously with the pain. It also helped the cornea heal because my eyelid was not constantly rubbing up against it. BUT, it was extremely difficult to keep it in the eye all the time. It kept falling out because of the dryness. I believe that I had a lens that was made especially to be a bandage lens. You know, I read an article in Reader's Digest a few years ago that said they are making a contact lens that can actually dispense medicine right to the eye. That would be wonderful for someone like you. Probably wouldn't help me because my dry eyes couldn't hold it in, but maybe it's something for you to look forward to.

I am glad you finally found a doctor who is willing to take time with you and do what is necessary. Don't worry yourself now with what will happen when he retires. Unless he is of retirement age, you don't need to worry right now. And hopefully this problem won't last forever. I know how you feel though. I can't imagine myself ever not being able to go to my current Ophthalmologist. I will not move away from here because I would never find someone like him to treat my eye problems, or someone who even knows about this stuff. I worry what will happen to me in 30-35 years when he is ready to retire! It upsets me that if I ever get cataracts, he'll probably be retired by then and not be able to do my cataract surgery! LOL! So I know how you feel!

Hello everyone Im so sorry Purple and Johnny that your poor eyes are so bad, I'd rather suffer from the strings in my eyes than those horrilbe stinging filaments, I don't even know how you could take that? The Castor oil drops are working but like Purple for the past two days now I have had the damn strings coming out of my eyes like crazy :confused: My eyes were doing so much better but now there is tons of strings and they are still dry as bones? I don't know what to do, my eye doctor doesn't have a cure for me and he even said he wished there was a magic pill he could give me and all his patients. Im still on the Restasis and all the vitamins, but I just had to let you all know that I am very sorry that your all suffering so much, sometimes when I read your posts I feel that I shouldn't even have to complain, compare to having to have bandage lenses and filmaents, dry eye and strings of mucus is horrible but nothing compared to what you have to go through. God Bless you all and I will keep in touch. Ciao D

Delilah, let me stress again that I do not have filaments on my eyes. Like you, I have the mucus strings. I did have filaments once or twice a few years ago but my doctor was able to just remove them and put me on some anti-biotic drops and I never had them again. But I have had abrasions and a lot of debris in my eyes due to the dryness. I have so many mucus strings that my doctor regularly has to remove them for me because they get stuck under my eyelids. They are sticky and like glue. But they don't seem to stick to my corneas or become filaments because I so regularly flush them out with gallons of tear drops!

The castor oil drops only seem to be a little more soothing for me. They are not helping with my tear quality at all. My doctor said my eyes are drier than they have been in months. :( He just doesn't know what to do with me anymore. There was supposed to be a new drop coming out for those of us who didn't have success with Restasis. It is called Diquafosol. The FDA says there is no need for it because it does the same thing as Restasis. So they pulled it. It is doing well in Japan though, possibly because they don't have Restasis there. The FDA thinks that everyone should just use Restasis. We shouldn't have any options. But what about those of us who Restasis doesn't work for, or who can't use it?

Purple,

Do you know what is causing your dry eye? Is it in any way related to the MS?

Mucus strings like glue, Im sick of them as well. Sorry Purple I thought you had the filaments horribly I think it's Johnny who has them horribly then gets rid of them. I know what you mean about the strings like glue, I pull my own out, I don't understand what in the hell is going on, I've about given up and I am not going to bother wasting money with plugs and having to deal with all the b.s. that comes with plugs. The castor oil eye drops are working for me much better but the strings are coming back again and my eyes are still dry as hell. I don't understand why they can't come up with a cure for this? Im just fed up, along with all the other medical problems I have I had to end up getting this, now going on 4 years with this eye b.s. I've just had it up to here with my eyes, using tons and tons of drops, all this stupid crap I have to do in the morning so I just can open my eyes, if this is whats called living then whats the point? Why is there so much crap that we have to deal with? I would give everything I own, even give back my degree and start over college if I could have perfect health, life would then be liveable and enjoyable. Later D

Delilah,

I know where you are at mentally. I have lost going on three years of my life and counting to "side effects" (putting it mildly) from a tranquilzer I took, Klonopin. This is a common reaction but people keep telling me that doctors do not have time to warn people of this prior to prescribing. But if people are at risk of losing years of their life they need to make time or not see the patient! This is not something fit for "oh yea, I forgot to mention"... This brings it`s own problems, dizziness, fogginess, balance problems, light sensitivity, etc., and I was one step from being homeless in that condition. But big miracles come when you must have them. I eat as right as I can, exercise some, and keep my psychological health as sound as possible. I take supplements like fish oil and magesium. Most all of I enjoy what I can of life to the fullest. Patience, hard to come by but very valuable... Or as the Spanish say "tranquillo"....

If I could go back in time to the day before my eyes started bothering me, I would. Then maybe I could prevent it. Nobody knows what caused my dry eyes. I have auto-immune problems which are probably causing it, but my blood tests always come back inconclusive. Dry eyes are not a symptom of MS, but having MS just sets me up for other auto-immune disorders that could be causing my dry eyes.

If I could go back in time to the day before my eyes started bothering me, I would. Then maybe I could prevent it. Nobody knows what caused my dry eyes. I have auto-immune problems which are probably causing it, but my blood tests always come back inconclusive. Dry eyes are not a symptom of MS, but having MS just sets me up for other auto-immune disorders that could be causing my dry eyes.

For some things unfortunately there are no easy answers. Those with good health take it for granted and it is hard for me not to be envious. Maybe eating a balanced diet of organic foods would help. It is the modern trend.. I have neurological problems also, drug induced though and most report full healing though it can take a long time. Unfortunately I simpy cannot afford an organic only, health food nut diet on a disability check.. I just do the best I can in that department.

Johnny I was wondering if all the years I was on Valium made me have dry eye? The year of 1998 5 family members died, 3 which were suicide so they put me on Valium and I was addicted to it for years. I just read on-line that it can cause dry eye, but if I haven't taken it for years then I am wondering how in the hell am I suffereing now? I guess I will really never know, like many others out there with severe dry eye it just came upon me. I also was diagnosed with Severe Lattice Degeneration, in which they cannot do much for that unless my retina becomes detached. I also have MGD along with the Severe Dry Eye. I have horrible sinus problems and need an operation on my nose so I am wondering as soon as I get that done I am hoping if it will help my eyes? Who knows all we can do is try to live as happy as we can. God Bless Delilah

Delilah,

How long have you been off the Valium? Benzo drugs like Valium can cause uncomfortable and multi-facted reactions in at least a substantial minority of people. Are numerous studies and the American Psychiatric Association acknowledges a long term syndrome that can last many months, sometimes to a few years. But no one that I have come across, including myself, ever heard about this at the doc`s office or the pharmacy. Thank God I figured it out or they would have convinced me that I suddenly went crazy and would have me on an assortment of meds. Dry eye can sure be an anxiety symptom, and such symptoms can persist long after the Valium or other benzo is detoxed as the drug alters brain function in the GABA schere, the area the handles calming.

Its been about 3 years since I've been off the valium, my eye problems didn't really start getting out of control till 2003, I am sort of thinking maybe it was this stupid freak psycho boyfriend I had that stalked me and wouldn't leave me alone that might of triggered this problem, because now I come to think of it, my eyes really started bothering me in 2003. The winter of 2002 it all started but progressed into 2003, this guy was a total psycho and I finally got rid of him in the summer of 2003, he caused me so much pain and mental stress that it seemed I cried throughtout the whole relationship which was 9 months. By the time I got rid of him my eyes were at their worst and seemed just to keep getting worse as the years went by. The castor oil eye drops are helping but now Im at a stand still and it seems that my problem has sort of regressed into getting worse again. My eyes are extremely dry in the mornings and Im using more drops again throughout the day, I thought these castor oil eye drops were my cure, they have helped but it just seems like Im at a stand still. Hopefully one day we all will have some relief. D

delilah,

Did you have withdrawal symptoms from the Valium? Eg. dry nose, mouth, eyes, or tremors, visual disturbances, dizziness, general vulnerability to stress? For many these symptoms can last a year, sometimes longer but they get gradually better. Those are very ugly drugs that should not be prescribed more than a few weeks IMO.

Sounds to me like we all have the same thing here, "dry eye" except the eye muscous with you and Purple swims around and mine gets embedded in the cornea. What has saved me so far is that this condition for some odd reason only develops in one eye and a high water bandage lense there keep the cornea moist so the mucous filament stuff never gets started... If this lense plan ever fails me for whatever reason I am back in a world of trouble.

Yes I did have withdrawls and had to be weened off easily, I was on them for years after the tragedy in 1998. But it's been about 3 years since I've been off of them, I don't know what really caused my severe dry eye and mucus strings but it's been with me for 4 years now and I am getting a little bit better, Im going to continue using the Restasis and the Castor oil eye drops. I really think that the Castor Oil eye drops helped a lot, I noticed a complete change in my eye mucus the day I started using them!! In fact that reminds me, I need to order more :) Have a wonderful weekend and I will keep in touch. Ciao D