Kann ein Augenarzt die Möglichkeit von Sjögren-Syndrom diagnostizieren?

Allergien, Blut und Immunsystem
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In the last five years:  Dry eyes, IBS, Laryngopharyngeal reflux - which causes me to lose my voice if I talk for any length of time.  I had to leave the choir I belonged to as I could hardly speak after rehearsals - Fibromyalgia, Lichen Planus (autoimmune), worsening of dry eyes.

I saw my GP last week and raised the possibility of Sjogren's.  I don't have a dry mouth, however.  He checked back, saw I had an ANA blood test last year which was negative and that was that.  On the NHS pages it says of blood tests  'But not everyone with Sjögren's syndrome has these antibodies, so you may still have the condition even if a blood test doesn't find them.'   I should have mentioned this, but I didn't, unfortunately.  I think because he was so confident that I didn't have it.

 I'll be seeing an ophthalmologist in January about my dry eyes.  Will he/she be able to tell from the pattern of dryness in my eyes if Sjogren's is a possibility?

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Not necessarily, I'm afraid Cheetah. This condition is very devious and hard to diagnose. That, and the fact that a lot of doctors - even some rheumatologists - don't know enough about it, means that it can take many years to get a diagnosis. I'm sorry to say your experience isn't unique. I think you'll just have to keep trying.

It took me 10 years from my first SS symptoms to get a diagnosis. However, I have to say I wasn't pushing for one as my symptoms weren't as bad as yours.

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Ich stimme dir zu, Lilly. Mein Rheumatologe weiß nichts über die CNS-Beteiligung bei SS und möchte mich an ein multidisziplinäres Team in London überweisen, weil er denkt, dass ich zu kompliziert bin! London ist 90 Meilen entfernt und obwohl ich natürlich hingehen werde, scheint es so albern, wenn alle Informationen auf der BSSA-Website verfügbar sind.

Ich kann meine trockenen Augen morgens nicht öffnen, weil meine Augenkugeln an den Innenseiten meiner Augenlider kleben, also muss ich zuerst Tropfen hineinsprühen, aber es wurde nichts über einen Besuch beim Augenarzt erwähnt. Ich werde dafür sorgen müssen, denke ich, weil mein linkes Auge sich anfühlt, als hätte es etwas Haut verloren. Ich bin es müde, für jede Kleinigkeit kämpfen zu müssen, es ist erschöpfend und sie sollten wissen, was zu tun ist!!!! Entschuldigung, der Ausbruch ist vorbei.

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Hi Maggie,

I can really sympathise with that thing about waking up with your eyelids stuck to your eyeballs. It's horrible, isn't it? Especially if you're getting it in both eyes at the same time. I went through a phase of that, but fortunately only in my right eye. This was a year or two after I got my first SS symptoms (dry mouth and a first-tingling, then-numb big toe). The eye used to bleed at the outer corner sometimes too.

Strange as it sounds, I didn't even recognise it as being due to dryness at the time. This was still 3-4 years before I'd started to suspect I had SS and 6-7 years before I got diagnosed. It was my GP who explained it was down to dryness, and told me to use OTC eyedrops regularly. It clearly didn't occur to her to make the connection between this new symptom and the dry mouth and peripheral tingling sensations I'd reported several times in the previous year or so. She just said all three were down to old age, as I was in my early 50s. In all fairness, I still hadn't figured out it was SS at this point either - but then again, she was supposed to be the doctor!

Fortunately, the extreme dryness in my right eye cleared up after about six months - during which time I got two attacks of conjunctivitis - and has never returned at that level. These days, it's the other eye that's most affected. That's how SS goes with me - moves from one symptom to another and to alternating parts of my body. At the moment, I'm still able to manage it with OTC drops, but I'm now using a different, superior brand recommended by a UK optician. They're more expensive than the basic stuff, but I don't have to use them so often and they don't sting at all.

Another thing that an optician recommended when I was in the stuck-eyelid phase was to apply moderately hot compresses to my eyes every morning. They just made my eyes more sore, without relieving the dryness, but I've heard that they work very well for some people.

As you're in the UK, I'm wondering whether you've consulted an optician about this? They're very good, and don't just do sight tests. They can do the basic test for dryness and will write to your GP if they feel it's serious. This might just get things moving.

I hope you can start finding solutions soon, or alternatively, that your dry eyes will go into a long remission, as happened to me. Incidentally, that can be a problem too. In some people the physical signs of SS (as well as the symptoms) can temporarily disappear almost overnight, making you look a liar when you finally attend your hard-won consultation with a specialist. Only to return six months later when you've been "cleared", of course. I'm afraid the frustrations of being an SS sufferer can be endless.

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Vielen Dank, Lilly. Ich habe im Laufe der letzten zwanzig Jahre oder so zahlreiche Augentropfen ausprobiert, sogar die von Moorefields Eye Hospital für Patienten nach der Operation, aber sie haben meine Augen wirklich brennen lassen, daher habe ich mich für vscotears oder blink plus entschieden, beide ohne Konservierungsstoffe, was sie teurer macht, boo boo! Tagsüber komme ich gut zurecht, solange ich sie regelmäßig anwende, aber die Morgen sind die Hölle! Ich habe eine Maske mit Wärmekissen zum Tragen in der Nacht gekauft, aber das hat leider nicht geholfen. Etwas, das hilft, sind Kammergläser. Sie halten Wind, Staub und Pollen fern und sind ein Segen, da ich viel mit meinem Hund bei jedem Wetter unterwegs bin.

Als dein Auge geblutet hat, muss das sehr beängstigend gewesen sein! Was hat der Hausarzt dazu gesagt?

Ich gehe alle sechs Monate zum Optiker, da ich Hydroxychloroquin einnehme, und sie hat bisher nichts über Schäden durch Trockenheit gesagt, aber es fühlt sich einfach beschädigt an. Wahrscheinlich nur meine Einbildung.

Alles Gute, Maggie

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Hi Maggie,

I'm surprised your optician hasn't said anything about dryness. My UK optician always does the test for dryness on my yearly visits. Two years ago she asked me to come back after six months, as the dryness was making my vision very blurry in my left eye, and she said I was getting to the point where I could be at risk of abrasions. However, after six months of using the drops she recommended, the dryness was back to "normal" levels (for me, that is). Maybe you should ask about this.

What did my GP say about my super-dry right eye bleeding from the outer corner all those years ago? If there are other members of the regular SS crew reading this, I can just hear the answer coming from some of them in chorus. So... altogether please: "Old age"! These boards are littered with tales of people being told their SS symptoms were all down to old age, even when they were only in their 50s. There've even been reports of rheumatologists and ophthalmologists saying the same thing, not just GPs.

Just to clarify: my eyeball wasn't bleeding. The bleeding came from cracks in the skin at the outer edge of my eye. The hot compresses made them worse. I'd had the same painful cracks at both corners of my mouth a year or so earlier, when my mouth was very dry.

The eye cracks come back from time to time, always when my eyes are dry. I just ignore them, and put in my drops more frequently. I've had this on and off for the past 20 years now and I know they'll eventually heal. Fortunately I've never had a repeat of the cracks at the corners of my mouth. That was incredibly painful, as they'd open up and bleed every time I tried to open my mouth to eat. I saw my GP and two dentists during the 6-12 months this was going on, and none of them had the faintest idea what was going on.

I too wear industrial goggles when I go out in exceptionally cold, dry, windy weather. I got them from my UK optician, so they're optically correct. I agree, they're a godsend, even if I do get a few funny looks. (My compatriots are less polite than the Brits, and don't hesitate to stare!)

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I dealt with my eye doctor for several years with him trying to treat my dry eye. And he really started making me angry and I finally just fired him and found a new eye doctor. And I also went to see an ophthalmologist on my own. I can do that because I live in the US and not even my insurance requires a referral. He put plugs in my tear ducts. That supposed to help my dry eye. Between that and the Restasis drops and just standard lubricating eye drops all day my eyes are doing okay now. My mouth is another story. My rheumatologist tried both of the drugs that can help with dry mouth and neither of them was going to work for me.

All that being said I do not have a positive test for a Sjogren's syndrome. But my blood test came back negative too. But in a couple of weeks I am scheduled to have my lip biopsied. And it's my understanding that that's a better test to determine SS.

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Vielen Dank für eure hilfreichen Antworten. Auch ich hatte Risse in den Mundwinkeln aufgrund von Soor, verursacht durch Mundtrockenheit, glaube ich, also habe ich Canesten-Creme verwendet, die Wunder gewirkt hat, nicht im Mund, sondern an den Ecken! Jetzt nehme ich täglich 4 Kokosnusskapseln ein, und das hat geholfen, den Soor fernzuhalten, da er antifungal ist.

Ich werde mit dem Optiker über die Augen trockenheit sprechen und meine Ängste äußern, weil mein linkes Auge insbesondere überhaupt nicht glücklich ist, trotz all der Tropfen und Gele, und die Sicht ist sehr verschwommen. Ich habe Katarakte, die sich sehr schnell verschlimmern, was sie auf eine systemische Erkrankung zurückführt, also muss sie meiner Meinung nach auf dem Ball bleiben! Vielleicht ist es Zeit für Augenpfropfen, ich werde das auch besprechen, danke.