Could i have ss syndrome in feb this yesr i woke to a foul odour in my mouth ive had tonilitus and t

How do you get on with these overnight gels, shaq?

I used carbomer gel for a year or two, originally on the advice of my UK optician, which was then confirmed by the first of the three ophthalmologists I saw this year. However, I never really got on with it, as it glued my eyes shut, and if I used it more than three nights in a row without breaking for a couple of days, it left me with very blurred vision all day.

This year's second ophtho told me to stop using it and switched me to a cream. Can't remember the trade name now, and it wouldn't be relevant as we're all in different countries anyway, but it contained lanolin and white paraffin. Like ophthalmic E45 (for UK readers only!) That lasted two days, by which time my eyes were so sore and bloodshot, I chucked it out.

The third ophtho was horrified that anyone would have suggested I use these products, as she said I'm not producing any oil at all in my left eye, and not enough in my right, and gels and ointments were just glueing up the oil glands even more. She's put me on one of those eye masks you heat in the microwave, to try and loosen up the oil glands. I'm hoping that might work.

As a former nurse, I do realise there's never any one way to approach a medical problem but I must say I'm a bit concerned by such widely divulging opinions.

Oops! Should be "diverging opinions" in last para. Senior moment - as I get older I find I muddle up my words a lot!

Some days I forget to use the gel and I don't notice the difference in my eyes... I see the optho every 6 months and she said my eyes were getting drier. I still get the feeling of a big stone in my eye ...(not really grit which causes burning or stinging,,,just something in my eye with rounded edges....I cant really explain apart from what I just said,,,,and if gently rub my eye in a circular motion it subsides. The pressure feeling I used to get has subsided. she also said I have huge floaters and is surprised I don't notice them   My secondary cataract in my right eye has got worse but not enough to be lasered away.

?I know exactly what you mean about Sen moments

sometimes I cant find the words  I need. I was wondering if I was getting dementia.. but I suppose its all part of ageing :- 

?I doubt if I could do the jobs I did until my late 50s    

Shaq, that feeling of a "big stone" in your eye is exactly what I've had in my left eye for a year now! It sometimes feels as if there's grit in there as well, but not all the time. I occasionally get sudden stabbing pains in the eyeball (a bit like peripheral neuropathy) but the only constant is this feeling of something pressing on my left eyeball. When I move my eye, I can actually feel it rubbing against something in my lower lid. It never goes away, but is generally worse first thing in the morning.

The last ophtho I saw (an eye surface specialist this time) said this is due to the severe scarring she observed on the conjunctiva of both eyes, but especially the left one. She's at a loss as to the cause of the scarring - even asked if I'd grown up in Africa! (I didn't.)

She ordered a full blood workup for SS and other AI conditions (the first full test I've had for 13 years) and I have to see her again in two months' time to see where we progress from there.

Which reminds me... I still haven't received my copy of the results. The blood was taken on 25 July, which is nearly three weeks ago. I can't remember how long it took to get the results last time, but it seems like I should have had them by now. I distinctly remember paying €2.50 up front for my own copy! Still, it is August, and Belgium basically closes from 1 July to 15 August every year, so that probably accounts for it. Come to think of it, I still haven't received the doctor's bill either, so maybe they'll send everything together after the 15th.

Yeah... age-related cognitive problems. I regularly forget how to work household appliances too. I have to go away and do something else, then go back and creep up on them. Then I find it all works again. This all started 20 years ago, in my mid-50s, but I don't think it's advancing all that quickly, so I guess it's just down to ageing. Scary though, especially as I live alone.

The odd thing is I still hold down a quite demanding voluntary job (20-30 hrs per week, much of it from home) which involves a heavy administrative load as well as a lot of people contact, and I don't seem to have a problem with that. It only gets embarrassing when I have to give a presentation - like the one I'm preparing for tomorrow - when I invariably start forgetting or mixing up my words. Still, since most of the other volunteers are pensioners too, they're quite forgiving - or maybe are too far gone themselves to notice!

Sometimes I forget where the light switches when I enter the kitchen for e.g or going into dark bathroom and I have been living here for 9.5 years.  This today I read that if you have certain eye conditions the chances of getting alkzheimers increases by 40 to 50%...one of conditions is AMD which I have in my left eye. Also mentioned cataracts have no bearing .. thankful for small mercies ...

?Does the optho think you may now have got other AI conditions (apart from SS) ? My last blood work up only showed a strong positive for SS.

?I do keep mentioning the 'stone' in my eye and she says its due to dry eyes. I am thankful that my current job is not stressful or very busy.

?I was born in Africa and lived there until I was 13 years old perhaps I will mention that to the optho and see what she says though I don't ever remember getting as eye infection (caused by parasite or bacteria/virus)

Let us know how you get on and what the results show what you have  

I don't know what she's testing me for as I only had the blood form in my hands for a few minutes while I navigated across the hospital to the lab, where I was called in straight away. (It wasn't a fasting sample so I got the blood taken immediately.) I think she's mainly going for SS though.

I do actually remember getting multiple attacks of conjunctivitis and styes as a child. Until we were relocated to rural social housing when I was eight, I lived with my parents in appalling conditions in the post-war East End of London, so I don't know whether that played any part.

You probably need to be a bit careful about suggesting anything to your ophtho - doctors can get touchy with what they perceive as "knowledgeable" patients. When I saw this lady's boss back in April I had a sudden massive attack of blepharospasm - probably a reaction to the Schirmer test. I mentioned I often had this - rather stupidly using the correct word. As French is my second language I can find it easier at times like this to use technical terms, as they often translate directly with just a tweak of pronunciation. Although he'd been charming till then, he almost jumped down my throat, saying I obviously thought I had some medical knowledge. He also said blepharospasm was purely "psychological" and unconnected with dry eyes, which is not what I read in the literature.

Fortunately he'd told me earlier in the exam that I had "the retinas of a young girl", so at least I'm not exposed to AMD at the moment. I hope you're able to keep yours under control. My lovely GP made the same comment in reference to my renal function a year or so ago. I said if only the rest of me was the same. He said functioning kidneys were more use than good looks at my age. I said he sure knew how to flatter a gal!

I've bookmarked your post and will get back to you with the results once I get them, and will also update you on the return match with the specialised ophtho in October. Stay as well as you can!

here the specialists are ok with what you say to  them or even suggest what perhaps you could be suffering from; perhaps it's due  health insurance paying so the Drs are quite happy to keep testing you and at times I am sure unnecessary testing for same reason. When I had endoscopy last month they wanted to do an ECG, blood test and then had an interview with an anesthetist.....I questioned all this as it hadn't been done 3 years ago at the last endoscopy and got the answer 'It is better care for you '    so money money, money ???

?u are fortunate indeed to have amazingly healthy retinas and kidneys.

?Your eye infections could be the root cause now for your corneas' condition 

?To totally change the subject .... the East End of London  properties are hitting nonsensical prices now so if you still have that place you are sitting on a goldmine

Yeah, I wish... Only it collapsed soon after we moved out and had to be demolished. In fact it started collapsing while we were still living there. The ceiling fell in on me one night while I was sleeping (at age 6) due to water damage from the leaky roof, and my parents had to dig me out!

Whenever I watch TV programmes where people reminisce about "the good old days" in the East End I have to switch channels to avoid throwing my shoe at the screen!

Incidentally, my problem isn't corneal scarring. The ophtho was concerned about that too, so did all the tests and they were negative. The scarring is in my conjunctiva - the membranes that cover the white of the eye and the inside of the lids. Just hoping they eventually find the cause, and maybe stop it getting worse.

I've even been wondering about that pterygium thingy another poster (Susan?) was talking about. It sounds like that is a form of scarring. I've got from now till the end of October to decide whether it's worth taking the risk of raising this with the ophtho. Having finally found a good one, I don't want to risk alienating her.

After the Grenfell fire  it seems that state of council housing hasn't improved much since we were kids. Didn't they find lots of blocks with the same cladding??

the East End has become a very trendy place now..gentrified. 

I googled the  pterygium and saw pics of it ..I think mine could be starting or paranoia setting in

?What are the symptoms of conjunctiva scarring ? Or no symtoms and the optho. saw it in routine examination? 

?You could mention to optho. by saying a friend mentioned that you might have it ?? or say a cousin has it and you are worried?? that way she wont get hacked off.?? just a thought.

My fear is retinal detachment... I know 2 people who had eye surgeries done and have detached retina ..my sister had cataract surgery done coz of slow growing cataracts (2012)   and another friend had myopia and had Lasik done in her 30s ..fast forward 20 years she is totally blind in 1 eye (detached retina couldn't be fixed) and got her retina partially 'fixed' in other eye..she  still drives with 1 'not so good' eye and also works (uses PC instead of laptop)

Not sure what the specific symptoms of conjunctival scarring are. I've had dry eyes on and off for more than 20 years anyway, with the usual symptoms of burning, itching, feelings of grit in my eyes, blepharospasm etc.

Then this sensation of some kind of lump in my left eye started a year ago. The "lump" itself isn't desperately painful, just very uncomfortable. I can feel it there all the time, as if it's in my lower eyelid close to the inner canthus. When I move my eye I get a feeling that it's moving over some kind of lump. And sometimes I get the distinct impression that the "lump" is moving around all by itself. Ditto something moving in my left nostril at the same time. (Though I realise I shouldn't mention either of these impressions to any kind of doctor if I ever want to be taken seriously again!)

The vision in that eye started deteriorating very suddenly a year ago at the same time I started feeling the lump. This had happened before in periods of extreme dryness, but had always resolved spontaneously. However, since I know the cataract on that eye is advancing anyway, I realise that could be the cause. Several friends have told me that when their cataracts started advancing it all happened very quickly.

At the start of this year, when my UK ophthalmic optician did her routine annual eye exam, she was concerned because she said when I looked to the right it seemed as if the conjunctiva over my eyeball in the inner corner of the left eye somehow wrinkled up to form a lump (which fitted in with what I was feeling). She even told me to go to A&E if I couldn't get an urgent ophtho appointment.

The first two ophthos weren't interested when I told them about all this, it was only the third one who bothered to evert my eyelids and do a thorough exam. She was the one who talked about scarring.

I have to say this does raise the question of why I only started feeling the lump in my eye a year ago. If my eyelids are scarred to the extent of blocking all the oil glands in one eye, as the ophtho said, wouldn't this have been going on for years, not just one year? Answers on a postcard please...

And paranoia... oh yeah!

maybe we credit the Drs with all encompassing knowledge ??? I have 2 relatives (brother and wife) . Both at top of their game living USA.  1 is neuro radiologist ( and 12 years ago only 1 of a handful in Florida) The other is a professor of endocrinology  and writes State polices and Chair of different State medical bodies, BUT when I asked questions about SS neither of them knew much about it . Maybe I was expecting them to know a lot more than they did about SS considering it wasn't their specialism 

I agree about not expecting them to have all-encompassing knowledge. Also, there's always more than one way to approach any problem in life, and medical problems are no different. Doctors will often give apparently conflicting opinions quite legimitately, depending on what they've seen in their own professional experience. Doctors are becoming increasingly specialised these days too - necessarily in many cases - so it's not reasonable to expect every doctor to know about every condition.

A case in point is the latest ophthalmologist I saw, who's a specialist (eye surface problems) within her speciality. This is also a growing trend in various specialities, and in many ways a good thing. However, I can't help feeling it's often sheer serendipity as to whether or not a patient stumbles across the right "specialised specialist" for them.

Neither of the first two ophthos I saw this year (one a head of department in a major hospital group) thought to evert my eyelids and look underneath them for the cause of my quite severe symptoms, which does strike me as a bit lackadaisical, if not downright negligent. It was only when I put the head of department under pressure over his statement that nothing could ever done for my cataracts because of the condition of my eyes (but not to worry about it!) that he grudgingly admitted he actually had an eye surface specialist on his team.