little cry for help

[fed up kate]

want to aplogise for sending this message again but typed it the wrong the place,well i think i did.

hi all

well im really going through a bad time at the moment and im really stuck on what to do next,ive had it for nearly 2 years and feel like its getting worse and worse,im doing everything i can for it fish oil,glucosamine,hot and cold compresses,lid hygiene,drops and still no comfort its like before i use to get some good days now i dont have any and its worrying so bad that im reaching a really low point,dont mean to moan as i know everyone must have these days but im really struggling with it.
I dont even have a dignosis on what i have as i cant seem to find anyone to help me or knows a great detail about dry eye so im scared incase theres a serious problem that im not fixing.
im trying to save money to see michel guillon in london but i cant even afford to do that,ive seen so many nhs specialist that all i get is "dry eye drops goodbye" and feeling like im cryin out for help and getting none.

Im not sure what asking for here but just some guidence really,ive had blood tests done for thyroid and auto immune but i read on here that even if there negative you still need a lip biopsy for a deffinate answer,ive got an apoitment with rhuamotology on 28th august,will they help me does anyone know as my doctor doesnt know what else to test for.
ive just got this gut feeling that i have something else wrong with me.
sorry for a long post but if anyone can help with what i can do next or who i can see or anything it would much appreciated right now.

thank you for reading x

[msienkiewicz]

Kate,

I understand your frustration. I didn't get any relief from drops. The only thing that makes my eyes feel close to normal is the lacriserts. Can you get those in England? They provide continuous moisture for 12 hours, and they really do work.

Melissa

[fed up kate]

lacriserts

thanks for replying

to be honest i have no idea if you can get them in the uk i will have to have a look on here see if anyone knows,are they like a contact lens or they quite small.
are they comfortable?

thank you for that i will look into them further

[irish eyes]

Oh Kate - I'm sorry you are feeling so rotten at the minute.

I wish I could give you some guidance on what to do next but I can't. The tests you alluded to - I had several of them too.

As I suffer with iritis in addition to dry eye, the hospital ran routine tests to see whether there was any underlying cause. My eyes affected my whole being - I constantly felt dreadful. A borderline rheumatoid factor was diagnosed but arthritis was more or less ruled out at that point. I tested negative for Sjogren's, lupus, diabetes and a host of other conditions.

Whilst I was relieved that nothing serious was discovered, I still felt as though I was back to square one. If nothing was wrong with me, then why did I feel so bad? Doctors' attitudes varied; I needed something to take my mind of it or I was depressed . I held on to some belief that if they could determine some underlying cause for my eyes being the way they were, then they could work out some possible paths of treatment and then this would result in a magical cure for my eyes.

As you pointed out, that feeling of abandonment is so depressing ie - Here are more eye drops - goodbye. I haven't been to see Michel Guillon so I cannot make any comment about his treatments.

Look after your health. Stay positive and strong. I hope today is a better day.

[fed up kate]

irish eyes

thank you for your lovley message.
sorry hear that you suffer with iritis as well its as if 1 thing wasnt bad enough.
did you get tested for all those conditions with rhumatology?
and also when you got tested for sjogens etc was that blood test as i read on here that you need a lip biopsy to get an accurate reading,not sure if thats what you had or wether thats correct.

well theres still no change today i just look forward to going sleep,quite sad i know but only comfort i get but now i wake up with proper veiny eyes so not sure what that about.

hope your ok and thanks again

[eva b]

Dear kate

so sorry to read you feel the way you do - it;s exactly the way I feel - been there, done that, been tested for all the things you have except haven't had the lip biopsy...rheumatologist told me the blood work didn't really indicate the biopsy, it was extremely unlikely. I'm now waiting for an appointment with the allergy clinic.

Can't use any drops - I react badly to all of them - only thing that gives me comfort is the warm compresses 3 times a day, and getting the meibomian glands expressed by my local optometrist every week. I'm very lucky, he has a special interest in dry eye and is more highly trained than your average optician.

But, like you, I feel my eyes rule my life and I 've almost given up hope. It is VERY very hard to keep positive.

I send you a big hug and lots of good wishes.

dxxxx

[fed up kate]

eva b

aww thank you for that really makes you feel better when people understand but it is really hard to keep positive cuz its just a fight every single day with it.
thats good that you have found someone like that as ive been trying to find someone who express the glands but wherei live its like needle in a hay stack but i dont know if i have blocked glands as when i do hot compresses they hurt more and dont really see anything come out.
do you know anything bout michel gullion with you living in london,or wether you have seen him

i just think if i actually knew what my problem is i may feel bit better.
but ive also got an apoitment at an allergy clinic but i dont know if it will show anything or be of any help but i suposes its to narrow things down.

thanks for your kind words it means alot x

[msienkiewicz]

Kate,

Lacriserts are like little grains of rice that you put the corner of your eye to produce tears for about 12 hours or more. They do not hurt me; in fact, I hardy notice them.

I would definitely give them a try if you can get them there. It would be worth asking.

Best wishes,
Melissa

[fed up kate]

melissa

thanks will try and see if i can hope so they sound great

kate

[irish eyes]

irish eyes

thank you for your lovley message.
sorry hear that you suffer with iritis as well its as if 1 thing wasnt bad enough.
did you get tested for all those conditions with rhumatology?
and also when you got tested for sjogens etc was that blood test as i read on here that you need a lip biopsy to get an accurate reading,not sure if thats what you had or wether thats correct.

well theres still no change today i just look forward to going sleep,quite sad i know but only comfort i get but now i wake up with proper veiny eyes so not sure what that about.

hope your ok and thanks again

Hello Kate

How are you feeling today?

Regarding your questions about tests, I have only hazy recollections of this. In addition to blood tests and chest / lung X-rays, I had to provide a saliva sample but I'm unsure if any salivary gland biopsy was done. I think if the glands contain white cells in a particular pattern, the test is positive for Sjogren's. (Don't take my word for this - I might be completely way off the mark!)

The Eye Department at the nearby teaching hospital ordered the tests because I had a few other symptoms that concerned them. As the iritis was very active at the time, I often had to contend with a queue of student doctors peering down the microscope and muttering among themselves about what might be wrong with this patient. Not happy memories to have!

Ruling out possible allergies seems like a good idea. Eva is right when she says that it is hard to be positive but I think we need to. I don't know whether we can get hold of lacriserts here in the UK. I've not heard any doctor mention them - but as we know - UK doctors' understanding of dry eye leaves much to be desired doesn't it?

Hang on in there.

[fed up kate]

hi irish eyes

well its still a bad day they dont seem to be improving,im also tucked up in bed with a cold so that doesnt help.
well i have lost faith in most docors round here we so behind with dry eye that im not confident with anything i get told and most time i feel like i know more than them.
but i wish we could get them lacriserts as they sound really good,i have posted a message on here to see if you can but no reply as of yet.

did you say you use vismed as ive just ordered some but not sure if they will be any good?.

hope your ok also

x

[eva b]

eva b

aww thank you for that really makes you feel better when people understand but it is really hard to keep positive cuz its just a fight every single day with it.
thats good that you have found someone like that as ive been trying to find someone who express the glands but wherei live its like needle in a hay stack but i dont know if i have blocked glands as when i do hot compresses they hurt more and dont really see anything come out.
do you know anything bout michel gullion with you living in london,or wether you have seen him

i just think if i actually knew what my problem is i may feel bit better.
but ive also got an apoitment at an allergy clinic but i dont know if it will show anything or be of any help but i suposes its to narrow things down.

thanks for your kind words it means alot x

Hi Kate
I've heard that Michel Guillon is very good and very knowledgeable...but very expensive. Several of the members on this forum have been to see him, Iblieve, with mixed results. I think in terms of getting a diagnosis it may be worth the visit - he certainly knows his subject.

Wherabouts do you live? have you actually seen any specialists?

I'm having a v. bad day with eyes today, because of strong painkillers for my back - so am in there with you.

Exxx

[fed up kate]

hi eva b

hope your ok,bad days are vile arnt they so do pain killers effect dry eye?

well i have an appoitment with him in august and im praying hes gona be my saviour as at my wits end with it all so looking forward to going.

i live in stoke on trent and see about 8 specialists private and nhs and all have bin no help,1 said bhelp the other said it isnt,1 said tears evaporate to quick but wasnt convincing and 1 said oh im fine leave off drops and everything,hmmm no way,and well basically just been fobbed off so really in need of an explanation and hope i will get 1 soon.

eyes are buring as we speak arghhhh such a nightmare,i should really come off the pc hehe but to much to read on here.

take care and hope you feel better soon

kate x

[msienkiewicz]

Having a bit of a spell myself....

Best wishes to all...
Melissa

[irish eyes]

hi irish eyes

well its still a bad day they dont seem to be improving,im also tucked up in bed with a cold so that doesnt help.
well i have lost faith in most docors round here we so behind with dry eye that im not confident with anything i get told and most time i feel like i know more than them.
but i wish we could get them lacriserts as they sound really good,i have posted a message on here to see if you can but no reply as of yet.

did you say you use vismed as ive just ordered some but not sure if they will be any good?.

hope your ok also

x

Hi Kate

I have used Vismed multi. The multi-dose container is a clever idea but not easy to operate so I might try the vials next time. Nothing really works for me I'm afraid.

It's frustrating when there is no consensus on your condition; I had exactly the same. I know now that I was being `fobbed off' because I have learned so much about it myself in the meantime. Doctors are human but it's disturbing that so few seem to know much about this condition - but so many seem not to care.

Hope your cold is getting better.