Beginning to despair. Not sure what to do next.

[CharlieGreenEyes]

Hoping for some advice.

I posted here a few months ago but then stopped checking in. It's so hard to use the computer with the eye situation and I kind of lost hope for a while.

Things have not got better and one year after first being seen by an opthalmologist, I still haven't had any tests other than the schirmers (and don't know my results) and keep getting sent away with drops (I was also prescribed Doxy for 3 months and have now been told they don't prescribe for longer than that - especially as I'd had no improvement on it).

My life's been on hold for a couple of years now and I don't know what to do. I really want to be investigated properly to try and find out exactly what is wrong and then try appropriate treatment. But I can't seem to get them to do any tests.

The problem is still really just my right eye, which is why I particularly wanted to have it checked out properly.

I don't seem able to assert myself with opthalmologists. I have tried and tried to ask questions (from advice given on here) but end up feeling like I'm being a "difficult" patient. I just had my most recent appointment with an opthalmologist (at Moorfields, which is close to where I live) and had brought a list of questions but I didn't seem to assert myself properly. I didn't know how to contradict him without getting his back up (and then getting no help at all).

I was told by an optician a year ago that I have MGD, blepharitis and dry eye.

The opthalmologist this week said that MGD and blepharitis are the same thing. I thought from this site that there are different types?

I asked if he could check what my MGs look like, are they producing enough oil, blocked oil, etc. He said there were no tests that could check for any of this. In fact, he didn't do any tests except used the slit lamp.

I didn't know what to say. I thought there were tests for this? It was hard to say anything like "I think you're wrong and there are tests". Especially as he was being nice. The first opthalmologist I saw (a year ago) was so rude and dismissive so I was just grateful that this one wasn't like that.

I think what made it more difficult was he seemed very busy and quite harassed. I think they might have been short-staffed. Twice whilst he was seeing me, he was called away by another opthalmologist (perhaps a trainee) to check on another patient. By the time he got back to me the second time, I felt bad so said I was sorry if I was keeping him. He said that he did have to get on so couldn't spend much longer with me. I hadn't had a chance to really discuss anything with him or ask for any tests.

I asked about restasis. He told me that wasn't available but I should try the generic version. I'm not sure whether to start it or not. It's called ciclosporin 0.2%. Optimmune eye ointment. It's for animals but the leaflet says humans can use it if prescribed by the doctor.

I've nervous to try it because it says not to use if there is fungal disease of the eye. As I haven't had any tests (other than the schirmers) I don't know whether I might have a fungal disease.

I don't know whether to just try the optimmune and wait for my next appointment or try to see someone sooner. I don't even know if I can ask to see someone sooner. Also can I insist on seeing a particular consulant if on NHS (I was referred to someone I've seen recommended on here but have never seen him - just seen by someone working under him on his team). I really can't afford private but don't know if it might be worth doing it once just to try and get some progress.

[dominorose]

We don't have Restasis in France, just cyclosporine (Restasis is made of cyclo and castor oil), so I think the Optimmume ointment should be ok... Where do you live?

I'm in the same state of mind. One year with dry eye and I'm a mess. I'm only 26, I returned to my parent's house, don't see my friends anymore, can't enjoy anything at all... I'm hitting rock bottom.

[CharlieGreenEyes]

We don't have Restasis in France, just cyclosporine (Restasis is made of cyclo and castor oil), so I think the Optimmume ointment should be ok... Where do you live?

I'm in the same state of mind. One year with dry eye and I'm a mess. I'm only 26, I returned to my parent's house, don't see my friends anymore, can't enjoy anything at all... I'm hitting rock bottom.

I'm so sorry you're going through it all too. It's just awful isn't it. I also don't see friends anymore. I try to keep in touch but it's not easy especially when they can't really understand. People just hear me say "dry eye" and don't understand how badly it can affect your life.

Are you seeing anyone regularly for your eyes? Are you taking anything for your eyes at the moment.

I'm in the UK (London). Sounds like the treatment/opthalmologists, etc is similar (not great!) in France?

Anyway, thanks for replying. I know my post was too long! You've made me feel a bit better about trying the optimmune. I might as well give it a go and see if it helps.

I really hope things get better for you. It seems like we all have to just keep fighting to get any help. I hope you get more help too.

[dominorose]

Thank you, I hope you'll get better too. Im currently on doxy, azyter, castor oil drops and artificial tears (OTC) but have barely seen a minor improvement in my eyes. I got really overwhelmed the past two days cause I gained weight because of the inactivity induced by DES, so I will try to focus on eating more healthy/when I am truly hungry, and stop having forbidden foods.

Are you a guy? What is your treatment?

[CarlyS123]

Sorry you're having such a bad time at the moment, I've had the exact same struggle with the NHS and the key thing is to push and keep complaining about it until they do something about it. I know how you feel when you say that you feel like you're wasting their time when you get there but honestly most the time you end up regretting what you didn't say rather than what you did say once you leave the appointment and you'll always meet d*** heads on the NHS. What really helps me is taking someone to the appointment with me and sit in on the consultation. I take my mum and you'd be surprised how much more they take you seriously when someone else is watching them.
I also have MGD and its actually a type of blepharitis, officially its called Posterior blepharitis I think (http://www.patient.co.uk/doctor/blepharitis). What's really helped me is getting the punctal plugs put in, before I would never have dreamed of getting that done but I finally got a decent doctor at the eye specialists and he encouraged me to get them and my eyes felt so much more comfortable afterwards, so perhaps try to push getting them done? Also I find that drops have absolutly no effect on my at all, I use Lacri Lube eye ointment during the day (only put a bit in though to stop blurriness) and VitAPOS during the night. Both are availbale without prescription at places like boots and most other pharmacists. I also use the warm eye mask everyday and massage my eyes, I used to use a warm flannel but that isn't good enough, I didn't see an improvement until after using the actual eye mask.
I've noticed on the NHS you just have to wait until you are lucky enough to get a decent doctor who cares. It took me about 9 months until I met one and he was the head of the clinic there. Just try to stay confident when you go to the appointments, write everything you have to see down and take it in with you and keep telling them your not happy with what's going on, you will get there eventually.

[cathy8889]

Hi Charlie, I've sent you a private message, sorry for reply late. I had same trouble with nhs, I kept ringing up before my appointment to make sure I was going to see the oph I wanted, I was so anxious, I did see someone else but I also saw her too and she asked someone she trusted to do all tests, then she came and looked too. I'm despairing at the moment. Thought doxy was working but my eyes have been very dry last three days and I'm back to severely inflamed pinguecula, feels like mental torture. The only thing that has made me feel a bit negative about my appointment is that she discharged me, I've heard people get monitored and I just can't understand why she did want to monitor me. Maybe she thought doxy was really going to work.

I was told I had mgd but not told in much detail how well my eyes were expressing. I've been reading things and they all say that to do a complete examination you need to express the meibomian glands. I've booked an appointment at the dry eye centre in London, they express the glands, do a meibography and do lipiview and look at treatment. The appointment is 225 , I have no money as not been working and am
In my overdraft but I can't go on not knowing how to make misled better.

I can't believe the consultant you saw was so rude and kept going away from your examination, it makes me so upset that you were treated like this. I was treated similarly as I think I wrote in message while back, disinterested ophthalmologists with no empathy or respect for disease that severely restricts peoples lives and causes great physical and emotional pain.

Cath xx

[CharlieGreenEyes]

Thanks everyone for replying. It's really nice knowing there's people who understand (although I'm sorry you're all going through it all too).

Dominorose, I'm female (I guess my username is confusing - sorry!). I'm sorry you've been down and wish you luck with the healthy eating. I also gained some weight because I'm not getting out much, and was perhaps comfort eating sometimes. I've just been trying to force myself to eat healthier and I'm trying to get out when I can even if it's just a small walk to the shops.

I'm using Hyloforte drops (prescribed by the hospital and repeat prescription from GP) and am just starting Optimmune (once at night before bed). I tried Doxy for nearly 3 months but have now stopped it. I've also just stopped doing the warm compresses because they seemed to make things worse. Maybe I wasn't doing it properly so I might try again with the eyebag.

CarlyS123, thank you for you advice, and I'm glad you've found a good specialist. I hope things are going okay with your eyes.

You described exactly how I feel - about wishing I'd said something after I'd left the hospital. My last appointment was just a few days ago and I keep thinking about what I should have said and pushed for. I had it all written down but was so tired that day that I left most of my notes at home (I couldn't sleep the night before because I was so desperate for the appointment to go well). I also waited 2 hours to be seen and by the time I went in, I sort of lost my confidence to be more pushy (I'm not complaining about the long wait to be seen because I know they were so busy).

I'll see if I can get a friend to come with me next time. I also want to try and push to see the actual consultant I was referred to next time. I've seen two who work under him and they were both nice but don't seem to know that much about MGD. I'm so bad at kicking up a fuss - and think I find it harder when they're nice! The first opthalomologist I saw was so horrible and rude but in a way it's easier to complain about that. The one I just saw was nice to me (but just didn't seem to know much and didn't have any time to spend with me) so I feel bad about asking to see someone else. Although I don't know if I'll see him again anyway as it seems to be whoever I get on the team that day. I know I just have to be a bit more assertive.

I did ask about plugs when I first saw someone but that was the really rude opthalmologist and he just instantly said they were no use and no-one should get them! I think I'll ask about them again if the optimmune doesn't help.

I tried Vitapos. I was prescribed it a few months ago by an opthalmologist but didn't get on with it. My eyes stayed really greasy (and blurry) all day (I took it at night before bed). I'm glad it's helping you. I suppose different treatments work for different people.

Cathy, I've sent a quick PM reply to you. Typed a proper reply and then it disappeared! I'll try and reply properly later or tomorrow. Thanks for messaging me. It's good to hear from you - but not good that things aren't better for you

I know I need to do the same as you and really push to be seen by the right person. But I don't know why they've discharged you. I think you should have a follow-up. If the Doxy doesn't help you should definitely go back and be seen again. We all have to do so much pushing to actually get any help! It's awful that you feel you have to spend money you can't afford to get some help. I don't know if you could try and get those tests done on the NHS? That's what I want too but now I'm also thinking about going to a private clinic - but also can't afford it!

I feel a bit bad for the opthalmologist I saw this week. I don't actually think he was rude but he was obviously really busy and overwhelmed. Maybe they were shortstaffed. He was nice to me (and that's so good after the rude one I saw that time) but it wasn't great that he kept having to see someone else when I was with him. I didn't have time to really discuss anything with him and he was probably distracted. He also didn't seem to know much about the problems although he seemed to mean well and wanted to help. I think I should see how the optimmune goes. Maybe it will help. I might start trying hot compresses again but with the eyebag this time.

[No tears in ATL]

Why won't they prescribe doxycycline for more than 3 months? My doctors say at very low dosage (20 mg), which is all is needed to realize the anti-inflammatory affect, it is fine indefinitely. In fact, I think it takes some people 6 months or longer to see any result, but my experience is that the result is minimal-keeps you stable and from slipping deeper, but not a cure-all.

[lizlou29]

Second No Tears in ATL. Doxy normally starts working at around 3 months. My ophth prescribes it for 6 months and would stop then if no improvement.

I know it's been said but taking a family member or friend is such a good idea. I've found the ophth's attitude is very different when someone is with you. I've found this with other doctors too. I'm not really sure why that is. I have been seeing the same ophth for a while now so i go alone but it took me taking various family members or my boyfriend (even though I'm 30) to actually get them to spend time with me. I normally brief whoever is with me on what i want to discuss so if i forget anything they can bring it up.

[CharlieGreenEyes]

I've made my mind up to take someone with me next time! I suppose I should have done it sooner because I know several people who've had more luck when going with someone (not for eye issues). I'm just sorry I didn't do this for my most recent appointment.

I think my ophth would have continued the Doxy if I've pushed for it. I was very quick to agree with him because I was scared of getting thrush on it. I bought probiotics whilst using it but it was getting expensive. I think I'll look into cheaper alternatives as the probiotics I got were from my local health store and they sold me a particular type they said was specifically for people taking antibiotics (they had other types that were cheaper). I'll look into alternative brands if I do ask to try the Doxy again.

I'm going to see how the optimmune goes (if I can cope with the burning) and then think whether I should try another course of Doxy.