deposits on cornea

Hi Lily

I saw a different rheumatologist (Head of rheumatology at a teaching hospital) yesterday evening.

?She told me stop using plaquenil immediately and referred me to another ophthalmologist in yet  another clinic. she wants to confirm the 1st findings from the opthalmolgist I have just seen. 

?she thinks as I have had cataract surgery and then got herpes in 1 of the eyes and lost 60% vision I should never have been on plaq...she was also scathing  when I told her the detailed results of blood tests to confirm SS with the 1st rheum were never discussed with me and on plaq I should be getting liver and kidney function tests.

And apparently I don't have fibro but have spondylitis which gives me excruciating pain from bone spurs pressing onto nerves on shoulders which then goes all the way down to fingers and so prescribed cataflam and fevdol (strong painkiller). have to admit I took a dose last night and this morning and seems to have eased the pain.   

You know that old saying..Drs differ and patients die.  

Yes indeed, shaq. That's why I always urge people to take more responsibility for their own health. Sometimes the differences can be accounted for by inexperience - or, sadly, even venality - but often this is simply due to the fact there's no one right way to do anything.

I had to learn this very early on in my nurse training, where I often got yelled at by doctors, and even threatened with dismissal, for carrying out the instructions of other doctors in the same hospital. This is something all nurses have to work around.

It's actually quite logical. There's no single correct way to do anything - be it ironing a shirt, setting up a filing system or building a house. It all depends on the teaching and former experience of the person doing the job (including the mistakes and disasters they may have seen). So why should medicine be any different? Apart, maybe, from the fact that doctors can by nature be very arrogant and unable to admit there might be another point of view.

I'm finally off to the ophthalmologist tomorrow. The latest attack of so-called dryness in my left eye (I remain unconvinced) has lasted several months and has been unbearably painful at times, with my sight being badly affected too. While waiting for an ophtho appointment - this is the one of the few specialities for which we have very long waiting lists here - I saw my GP, who prescribed indomethacin eyedrops. It's an NSAID I'd never heard of before. He considered prescribing cortisone drops but hesitated because he feared it might be herpes or another viral infection.

The indomethacin drops have helped a lot, but I'm still getting some pain and a lot of glare in that left eye. This always happens during these attacks, but is much worse this time, and I'm beginning to suspect the cataract on that eye is developing too. I got the first signs of cataracts in both eyes 25 years ago, but they've never really advanced.

My one concern is that when I get there tomorrow, the guy is going to say don't worry about this problem, we'll operate on your cataract first, then see how it goes. (Belgian ophthalmologists, as well as having the longest waiting lists, are also well-known as being the biggest crooks!) I already have my answer to that one. No one is operating on either of my eyes till I find out exactly what it is that's causing all this pain. Cataracts don't hurt!

I do hope your new medication helps with the pain. I've had a pinched nerve in my neck twice in my life and can really sympathise with that description of the pain going down to your fingers.

OMG Lilly I love reading your posts. I too have many of your problems due to Sjogrens. I too was a RN so I know a lot about the way doctors work and their arrogance at times. You are so correct that we all need to take charge of our health and do research on our own. Thanks to internet we can do that. Something our parents didn’t have. The internet is is so good and so bad!!!  I think we all know so much more now and I love it. Just talking to you and the others on this site has brought so much happiness to me. I’m not alone anymore with my ongoing health issues. 😊💋

​How did your opthal visit go ? any answers to your pain?

Thanks for asking, shaq. The visit was a complete waste of time!

Background is I saw my usual excellent ophthalmic optician in the UK on my last visit there a few weeks back. As usual, she did a 20-minute exam, including full sight test, visual fields, intraoccular pressure, optic disc, Schirmer and fluorescein (to detect corneal abrasions). She said she was very concerned about my eye, didn't know what was wrong, but if I couldn't get in to see an ophthalmologist in a couple of weeks, I should go to A&E. All this cost me just £25.

So... this afternoon I went to see a fully-paid-up ophthalmologist back in Belgium. His assistant did intraoccular pressure and the basic focal length test, then I was called in to see the great man. He appeared to be at least 95, barely able to walk between his desk and the examination area. He spent five minutes taking a brief history and doing a very basic exam. No visual field test, no Schirmer, no fluorescein, a 10-second glance at the discs (and I didn't tell him all this had been done weeks earlier). Then he asked me to read just the two top lines of the chart with each eye, on the basis of which he pronounced my sight to be 20/20 in both eyes. Absolute rubbish - I've never had anything like 20/20 in the left eye, even in my teens.

At the end of this, he said the problem was dryness, but no damage had been done, and advised me to use OTC lubricating drops 20 times per day. Yes, you did read that right! When I tried to ask him a couple of questions he just said jokingly (I think) that I was a "bad patient" because no ophthalmologist would ever be able to do anything to help my condition, and kind of pushed me out the door. I don't think he actually said: "Release the hounds!" but I felt that was the subtext. And he did look a bit like Mr. Burns! For that privilege I was charged €50, of which the insurance will reimburse €13. €37 at the current exchange rate comes to about £32.50 - vs. £25 for the excellent, thorough examination by the UK optician. Still, at least he didn't try to push me into cataract surgery. In fact, when I asked him how my 20-year-old cataracts were doing, he said: "What cataracts? I can't see any cataracts." (Probably because of his own cataracts!)

Only two interesting things emerged from the consultation. One was that he immediately said I had Sjogren's syndrome after just a visual examination. No doctor has ever admitted to that without a struggle before. And needless to say, I hadn't mentioned it myself. I never say the S word to a new doctor. They invariably take it as a challenge, if not a personal affront! The second was that he said I had an adequate layer of tears on both eyes, but no oil at all on the affected eye. I'd never heard that one before. I've been researching Meibomian gland dysfunction ever since I got back!

So I'm back to square one - and I really can't see how I can fit in 20 applications of eyedrops per day. Tomorrow morning I'll call the St. Luc university hospital and get an appointment there. They're generally reckoned to be the best in this city, though they have waiting lists that reflect this. They're way across town from me but we don't have the same crazy postcode system as the UK. I doubt whether the insurance will reimburse two ophthalmic consultations in less than a three-month period, but then again I probably won't be able to get an appointment with them before May anyway.

Still awaiting the results of ultrasound and X-rays on my shoulder a week ago. The tendon pain in my arm is getting really unbearable now.

Apart from that I'm fine, and recovering well from a short, sharp attack of Aussie flu. I hope your nerve pain continues to improve, and you can get some answers on the rings in your eyes.

You made my day with your humor. Us Sjogrens people need some humor to deal with all the pain and misunderstanding we deal with on a daily basis. Keep it up.......hugs from Phoenix, Arizona. 😎🌵😉

Oh boy, Beverly - I wouldn't like to live in Arizona with dry eyes! It's bad enough in rainy northern Europe, so I can't imagine what it would be like in an arid region like that.

omg Lily, we all seem to be going round in ever widening circles without end in sight. 

?The opthalmologist  last week didn't say anything new ... I had all the usual tests including the eye CT scan, he said there were some changes to macula and the cornea but nothing to do with plaq and apparently 8 months wasn't long enough to do damage  and I could resume the plaq. 

?the most notable thing about my visit was it lasted 3 hours from going in to leaving... with a lot of hanging around and staff all apologizing for the delay. the opalmologist is a member  of a VIIIIIP family (if u know what I mean....I live in the Middle East ) and  all his other patients were all women ..looked like other family members by their high end designer bags   and shoes and all were seen to before me... the man was more interested in how my SS was diagnosed than the state of my eyes. 

?I paid over 300 pounds and now have asked insurance company for reimbursement. (I hope to lose only 20%..as per policy).

?the rheum also had me doing blood tests for ANA and ANA (Total pattern)

will get results soon.

all in all not very satisfying